Choices That Matter

An Invitation to Follow Me to My New Blog

2011-12-18T09:00:00.000-05:00

I have been invited to join the ranks of bloggers over at Patheos, a web portal on religion and spirituality. It's a great time for me to renew my commitment to blogging regularly and reach out to some new audiences, with my book coming out in just a few weeks.

So, as of today, I am discontinuing the Choices That Matter blog. However, I will continue to cover reproductive ethics and technology on my Patheos blog. Please click on over to the new blog, and subscribe via e-mail or RSS feed. I plan to post on reproductive ethics at least once per week, as well as write more broadly on parenthood, faith, and disability. I will occasionally repost or rework popular posts from Choices That Matter, so some of the material on the new blog will be familiar to you. I will be writing plenty of new stuff as well.

I am so grateful for the faithful readers who have made this blog a success and helped me sharpen my writing on the sticky, often troubling issues associated with reproductive technology. I hope you'll follow me to my new blog and continue to contribute to these important conversations. Many thanks...and I'll see you over at Patheos!

A Mom's Story of Using PGD

2011-12-01T04:48:00.000-05:00

I commend to you a post over at my friend Maya's ("Marf Mom") blog. A guest writer named Sarah has a brief post about her experience using PGD to conceive a baby who would not inherit her Marfan disorder. Marfan is a connective tissue disorder (in fact, it's in the same "family" of genetic disorders as mine—osteogenesis imperfecta). Sarah inherited Marfan from her died, who died from the disorder when Sarah was just a baby. Sarah's PGD cycle was successful, but her subsequent pregnancy with twins was difficult. Read her post here.

Readers are continuing to add new comments to my and my colleague Karen Swallow Prior's dual posts on abortion over at Amy Julia Becker's Thin Places blog, and the comments continue to be challenging, respectful, and engaging. The three of us are really pleased at how our little experiment in respectful dialogue on a polarizing topic has turned out.

Q&A on Abortion

2011-11-29T08:50:00.001-05:00

Last week's dual posts from me and my friend/colleague Karen Swallow Prior about our respective positions on abortion has been a great success. According to Amy Julia Becker, who is hosting this dialogue on her blog, the posts have brought in lots of traffic. And the comments have all been respectful and engaging, even when commenters are questioning or disagreeing with what Karen and I wrote.

This week, we're posting follow-up answers to questions posed by readers and by Amy Julia herself. Karen was beautifully succinct with her answers. Me...not so much. Because I got more disagreement from commenters than Karen did, I felt it important to respond to people's concerns in depth. I think the ethical questions around abortion are complex and difficult, so felt it would not be helpful to respond to questions with simplistic, short answers. To keep her blog posts to a reasonable length, Amy Julia will only post portions of my answers on her blog, and send people here to my blog if they want to read the whole shebang. So here are my answers to the questions raised by last week's post on why I am pro-choice, in all their lengthy detail. This is not so much a blog post as an essay that I am posting on my blog. I trust that readers who are interested will get something out of it despite the length, and those who aren't interested can ignore it. Amy Julia, Karen, and I once again ask that any responses to this conversation, either here or on Amy Julia's blog, be respectful and well-mannered. I'll be back to regular blogging starting after Christmas, though I may post a few things between now and then.

Why is ending the existence of an embryo or fetus morally different than ending the life of a baby once s/he is born? In other words, if we are treating embryos with reverence as human lives created in the image of God, why is abortion not murder?

I believe that fertilized eggs are God-given human lives that should be treated with reverence, and that the deliberate ending of an embryonic human life is a morally weighty decision deserving of great care. I do not believe that embryos are mere clumps of biological matter to be subjected to parental whims. However, I object to characterizing abortion (or the discarding of embryos created via reproductive technology) as the “murder of innocents,” for a number of reasons.

The following paragraph comes from my upcoming book, No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction.

Politically charged pro-life/pro-choice debates have made it difficult to contemplate embryonic life because these debates insist on absolutes. Either embryos are the same as babies, or they are merely bunches of cells subject to their parents’ choices. I think most people, when pressed, would say that neither is quite true. Embryos occupy an in-between place. They are liminal; they serve as a doorway or threshold between one state of being (individual sperm and eggs that only have the potential for life until they join with the other) and another (the definitive, transforming presence of a newborn child). The threshold is essential for connecting those two states of being; it cannot be lightly discarded any more than a house can be built without doors. But it’s also more a passage to something vital than a destination in itself.

In my book, I go into this idea more, looking at the ambivalence with which we, as individuals and as a culture, perceive embryonic life, whether in the womb or (when reproductive technology is involved) in the laboratory. That ambivalence—an ambivalence that is relatively universal, true of those who are pro-life and those who are pro-choice—provides a clue that the nature of embryonic life is not nearly as clear-cut as those on either the pro-life side or the pro-choice side of abortion debates often make it out to be. Churches that hold a clear pro-life position, for example, generally don’t hold memorial services for miscarried embryos. So abortion is murder but a miscarriage doesn’t count as a death to be publicly mourned? Likewise, a woman who has been passionately pro-choice her whole life and miscarries generally doesn’t say, “Oh well. It was just a clump of cells, subject all along to my parental choices. No big deal.” Most of us, on some level, recognize the shades-of-gray nature of embryonic life. For me, that nature means that while deliberate destruction of embryonic life, via abortion or the discarding of excess embryos in technological reproduction, is a decision of moral significance, it is not murder.

In the classic Bioethics: A Primer for Christians, Christian ethicist Gilbert Meilaender writes about technological reproduction (IVF and so forth) and the difference between “reproduction” (the meeting of sperm and egg) and “procreation” (the arising of a new human life out of a man and woman’s act of love). Meilaender argues that, “In our world there are countless ways to ‘have’ a child, but the fact that the end ‘product’ is the same does not mean that we have done the same thing.”

For me, a similar idea holds true for abortion vs. murder: The fact that the result is the same (the ending of a human life due to another’s actions) does not mean we have done the same thing. (Note: I am applying Meilaender’s logic concerning technological reproduction to abortion, not saying that Meilaender himself used this logic on the issue of abortion. Meilaender actually opposes abortion except under some narrow circumstances, such as rape, incest, and when the mother’s life is threatened. My problem with Meilaender’s view, and that of many other pro-life advocates, is that it does a great job of convincing me that Christians should not have abortions except under very narrow circumstances. It doesn’t, however, convince me that abortion should be illegal.)

Our legal system, as well as our human sense of right and wrong (learned and innate), recognize that intent, context, and circumstance determine whether the ending of one human life at the hand of another qualifies as “murder.” Let’s say a man hits a pedestrian in his car and kills her. Our reaction to this tragedy, including whether we call it “murder” or not, and whether and how the man is punished, will take into account intent, context, and circumstance. Maybe the driver was a devoted family man working two jobs who dozed off at the wheel coming home from an overnight shift. Maybe he was a soldier patrolling a neighborhood in Afghanistan who ran his vehicle into a suicide bomber intent on taking her own and many other lives. Maybe he was an alcoholic with previous DUI arrests who ignored the bartender’s suggestion to call a cab and got into his car with a blood alcohol level twice the legal limit. Maybe he was an angry ex-husband who stalked his former wife and ran her down in cold blood as she walked to her bus stop one morning. In all four cases, a person died after a man struck her in his vehicle. All four cases are tragic. But we do not classify all four as “murder of an innocent.” Just because the result is the same doesn’t mean each of the men in these scenarios did the same thing.

An abortion ends a nascent human life. It is highly morally objectionable under some circumstances (e.g., when a woman has unprotected sex with multiple partners and repeated abortions, essentially using abortion as a form of birth control), and more understandable, though still carrying moral weight, under other circumstances (such as a married woman with several children who has a chronic, debilitating disease, who chooses to terminate an unplanned pregnancy to preserve her already compromised health so she can continue caring for her family). But abortion does not always and necessarily qualify as murder.

In my original post, I mentioned that my interest in reproductive ethics stems from my experience with preimplantation genetic diagnosis (PGD). PGD is in vitro fertilization (IVF) with the added step of screening fertilized eggs for a particular genetic mutation. In my case, we tested four fertilized eggs produced via an IVF cycle for the genetic mutation causing my and my oldest daughter’s osteogenesis imperfecta (OI). OI is a genetic bone disorder that leads to frequent bone fractures, usually as the result of little or no trauma. Between us, my daughter and I have had about four dozen broken bones. Several weeks ago, my daughter broke her arm when she was putting away a heavy laptop in her science class. I once broke my thigh bone when I sat down on the bathroom floor, knees tucked under me, while my grandmother brushed her hair in the mirror. OI is a painful, maddening, capricious disorder, and we decided to use PGD to try to ensure that our second child would not inherit it. My upcoming book is the story of that decision and its aftermath.

Of the four embryos we had created via IVF, three tested positive for OI. We had the remaining embryo transferred to my uterus (the cycle ultimately failed and I did not become pregnant) and had the other three discarded. That decision—the discarding of three of our embryos—was a significant one. I have been mulling it over for the last nine years. It was a morally significant decision made with fear and trembling. I look forward to the time when we no longer see through a glass darkly. I have a lot of questions for God. I trust that God’s abundant grace and forgiveness was upon me then and will be eternally.

There is a woman out there in the blogosphere who takes any chance she possibly can to tell the world that I murdered three of my children. In fact, since my post appeared on Amy Julia’s blog, she tweeted her murder accusation twice. Here’s the thing: Her accusation doesn’t bother me (though I’m pretty tired of it by now). Because I know it’s not true. I know there is a difference between my and my husband making a morally fraught decision to discard three embryos because of a desire to have a child who would not break her arm putting away a heavy laptop, and my marching my three children upstairs, drawing a bath, and then holding each of their heads under water until they stop breathing. I don’t know what exactly God makes of the decisions my husband and I made about having kids. But I know we did not murder three of our children.

Objecting to this line of thinking, people say things like, “Just because we can’t emotionally connect with a bunch of cells the way we can connect with a squalling infant doesn’t mean we can treat that bunch of cells as disposable. It’s still a human life. If we can choose to end the life of that bunch of cells, what’s to stop us from ending the life of an infant or child because it is inconvenient, or disabled, or unwanted?”

First, we are not logic machines. God gave us emotions and intuition as well as knowledge, and I object to the idea that it’s morally corrupt to make decisions informed by emotions and intuition. When we insist there is no meaningful difference between a baby and a microscopic embryo because the differences in how we perceive these two forms of human life arise from our emotions instead of our logic, we are discounting the rich emotional and intuitive ways in which we interact with the world.

Second, in answer to the question of, “What’s to stop us from doing x,y,z?”…well, we are. We can stop ourselves. I reject the “slippery slope” argument, the idea that if we allow abortion under some circumstances, we’re leaving the door open to infanticide and other horrors. We can choose, as a society, to put speed bumps, even outright barriers, on the slippery slope. We can choose to say, “X is acceptable, but Y is not.” Indeed, a central focus of my work in reproductive ethics is that we need to stop sitting by helplessly, unwilling to say that some reproductive choices are acceptable and others are not, as fertility clinics offer whatever procedures are clinically possible to anyone willing and able to pay for them, as people go to questionable lengths to have biological children, arguing that they have a right to do so, and as the culture preaches that parents have a duty to only bear children who are primed for success in our individualistic consumer culture (and therefore, a duty to ensure that children with physical or intellectual disabilities are not born).

What restrictions would you put on reproductive choice?

Fervent pro-choice advocates face a dilemma as reproductive technologies such as prenatal diagnosis, IVF, PGD, and surrogacy become more sophisticated and ubiquitous. The ability of parents to select the gender of their children, via either preimplantation genetic diagnosis to select embryos of the desired gender for transfer, or via abortion after ultrasound determines a fetus’s gender, illustrates this dilemma well. Again, to quote from my upcoming book:

Because the pro-choice movement centers on women’s rights, sex-selection technology poses a particularly thorny problem [for pro-choice advocates]. Sex selection to ensure male offspring stems from ancient patriarchal notions that boys are more valuable than girls. American fertility doctors treat patients from Asian, Middle Eastern, and African cultures who take advantage of our unregulated fertility industry to use PGD to ensure that they have baby boys. In some cases the mothers-to-be proactively seek the treatment, and in others they appear to be under pressure from husbands and extended families to deliver much-desired male children. Some U.S. fertility clinics even proactively market PGD for sex selection to people of Indian and Chinese descent by advertising in foreign-language newspapers and partnering with overseas fertility clinics that provide the first steps in treatment, before sending their patients to America for egg retrieval and embryo transfer. In such cases, accessing fertility treatment may be less about a woman’s freely exercising her choice than about her obligation to conform to ancient cultural and familial practices that are fundamentally oppressive to women.

Here in the United States, sex selection is used more often to ensure girls than boys. Many mothers in particular feel that their family is not complete until they have the daughter they have always dreamed of. Even this preference for girls, however, may ultimately undermine women’s interests by reinforcing entrenched definitions of femininity that focus on physical appearance. [Journalist Liza] Mundy noticed that “in the sex-selection chat rooms I looked at, there were lots of women looking forward to dressing little girls in pink outfits and putting pretty bows in their hair.”

Mundy discussed the sex-selection dilemma with a Planned Parenthood spokeswoman who, while concerned about sex-selection technology, said she did not think it should be banned. “Her fear,” writes Mundy, “is that any effort to direct any reproductive decision made by any individual is to call into question all decisions made by all individuals, including, of course, the decision to abort.” Mundy, on the other hand, argues that “it should be possible to (1) accept a woman’s moral right to choose whether or not to continue an unintended or unwanted pregnancy, and (2) reject an infertility patient’s right to infinitely select desired traits in offspring.” But that will only be possible if those on the left are willing to question or reframe their rhetoric of choice and parental rights, and to recognize that unlimited choice can be as problematic as no choice at all.

I do not support unlimited reproductive choice or unlimited abortion rights. I do not support late-term or partial-birth abortion. I think sex selection via PGD or abortion should be illegal, and that preimplantation genetic diagnosis should be used only to screen for significantly disabling or fatal genetic disorders, not for either gender or non-disease traits (e.g., hair and eye color).

Like many who read Amy Julia's blog, I’m familiar with the oft-cited statistic that about 90 percent of pregnancies in which the fetus is prenatally diagnosed with Down syndrome are terminated. I believe that, ultimately, parents have the right to decide whether or not to continue a pregnancy when their fetus is prenatally diagnosed with a genetic disorder. However (and this is a big however), in my work collecting stories from women who have made difficult reproductive choices, I’m aware that the quality of information, counsel, and support that families receive from their caregivers in the aftermath of a troubling prenatal diagnosis is often poor. Many (by no means all) medical providers express a bias toward termination, and fail to offer families up-to-date information on what it is like to raise a child with a particular disorder. My own disorder, OI, is relatively rare, and I know of more than one family who was told that their unborn child had the fatal form of OI when, actually, the child had a severe but manageable form of the disorder. So when I hear of parents who choose to terminate a pregnancy after receiving a prenatal diagnosis of fatal OI, I grieve for that child and those parents, knowing that there’s a decent chance that child’s diagnosis wasn’t fatal after all. While I want parents to retain the right to make their own decisions about pregnancy termination, I also believe that significant improvements in the information and counsel parents receive after a prenatal diagnosis would substantially lower the termination rate.

Nate asked how I view scriptures that claim God’s wrath against societies that allow the blood of innocents to be shed, pointing me to this collection of passages gathered in support of a pro-life perspective: http://www.epm.org/resources/2010/Mar/8/scripture-shedding-innocent-blood/

I am suspect of any attempt to take ancient biblical texts, isolate them, and then insist that they give clear counsel on modern-day ethical dilemmas. There are many ways in which a society can support and enable the shedding of innocent blood—wars with significant civilian casualties, a health care system that fails to provide care to the poor, etc.—so I am leery of insisting that these passages make a clear case against Christians accepting legalized abortion. I’ll go back to my first point: I believe human life—human lives—are a gift from God and should be treated with reverence. To me, that is crystal clear in Scripture. What is not crystal clear is exactly how that reverence for God-given life precisely influences how Christians should respond to modern legislative, political, medical, and ethical issues. For example, scripture clearly says, “Thou shalt not kill.” Yet, as I discussed earlier, Christians generally accept that there are various legal and moral responses to one person killing another person, so that even this very clear commandment does not translate into every person who kills another person being imprisoned for murder.

Several of the scriptures mentioned in this link refer to Molech—an ancient god to whom people were required to sacrifice their children. Pro-life advocates have used the name of Molech as a weapon against pro-choice advocates. My faithful reader who calls me a murderer has also called me, “The high priestess of Molech.” As one of my writing colleagues pointed out, perhaps I should be flattered to be not just a priestess, but a “high priestess”?! All this to say: I don’t think quoting scriptures in isolation and referring to fellow Christians with the name of pagan gods is useful if we want to actually figure out appropriate Christian responses to the moral dilemmas facing our culture.

A Note on Statistics

One topic that came up several times in the conversation on Amy Julia’s blog is whether statistics indicate that making abortions illegal makes them happen less often. There aren’t any reliable statistics comparing the U.S. abortion rates pre- and post-1973 (when Roe v. Wade legalized abortion). Despite the lack of available data, I came across more than one pro-life advocate who insisted that abortion rates “skyrocketed” after 1973, as well as more than one pro-choice advocate who cited inflated statistics about how many thousands of women died or were injured by illegal abortions prior to Roe v. Wade.

There are some straightforward statistics, however, showing that abortion rates are not higher in places where abortions are legal, and are not lower in places where abortions are illegal. In other words, these data indicate that the legality of abortion does not significantly affect whether or not women have abortions.

The most relevant information I found was this study in the medical journal The Lancet. Some pro-life supporters will no doubt discount this study entirely because it was conducted by the Guttmacher Institute, a non-profit focused on sexual and reproductive health and initially formed as a semi-autonomous arm of Planned Parenthood. It is no longer affiliated with Planned Parenthood, no longer receives Planned Parenthood funding, is governed by an independent board, and partners with non-partisan entities such as the World Health Organization. While I understand the hesitation to accept research data provided by an organization with a history of alignment with a pro-choice organization, I also trust that a renowned, peer-reviewed medical journal would not publish a study that overtly manipulates data to promote a political agenda. This study offers some very basic data relevant to the question of how abortion’s legality affects its occurrence.

For example, Western Europe (where abortion is legal) has the lowest abortion rate in the world. Abortion rates in the U.S. and in other places where abortion is legal have declined quite dramatically in recent years. Overall, there is not a significant difference in abortion rates between parts of the world in which abortion is legal vs. those where it is illegal. For example, the overall abortion rate in Africa, where abortion is illegal in many countries under many circumstances, is nearly the same (in fact, ever so slightly higher) as the overall abortion rate in Europe, where abortion is legal in most countries.

A Dialogue About Abortion

2011-11-18T09:21:00.001-05:00

My friend and colleague Karen Swallow Prior and I have a dialogue going on over at Amy Julia Becker's Thin Places blog. Yesterday, Karen posted a piece about why she is a pro-life Christian. Today, I posted an essay on why I am a pro-choice Christian. Next week, each of us will answer some questions about our respective positions on this loaded topic, so check back in to Thin Places on Monday and Tuesday. Our dialogue is an attempt to show that it's possible to believe passionately in a particular moral or theological position, while still treating Christians who hold different positions with care and respect. Whenever I'm talking to people about the various debacles that have marred my writing life over the past few months, there is one pretty much universal response: "How can people who call themselves Christian treat you, a fellow Christian, with such lack of charity, fairness, and respect?" I wish I knew. I am grateful to Karen for her friendship and support, and to Amy Julia for offering her blog as a safe place for us to have this conversation with each other and with readers.

Now I'm going to go crawl back under my metaphorical rock. My online holiday will continue until early December.

An Online Holiday

2011-11-10T06:04:00.000-05:00

After much thought (and after receiving my publisher's blessing) I have decided to take a several-week holiday from the online world. Until some time in early December, I will not be blogging, reading or commenting on other blogs, or keeping up with Facebook and Twitter. I will continue to read my e-mail, since I use that for managing many areas of my life besides the professional one. I will do some writing during my hiatus, but without the pressure to present it to an audience immediately. Perhaps I'll write something that will eventually see the light of day, and perhaps I won't. I will also be moving ahead on finding a company or individual who can help me design a new author site; if you have any recommendations along those lines, please e-mail me! I'm hoping some time away will allow me to get my mojo back after a rough few months in my writing career, and also prepare for the release of my book.

As a result of one of those rough times, my friend and colleague Amy Julia Becker has asked me and Karen Swallow Prior (another friend and colleague) to write joint posts for her Thin Places blog about why we take the positions we do on the abortion debate (pro-choice for me, pro-life for Karen), particularly looking at how our faith informs those positions. We decided to do this after what happened with the Christianity Today women's blog. Karen, Amy Julia, and I wanted to show that it's possible to feel passionately about our positions on social issues while still treating each other with respect. My and Karen's articles will appear on Thin Places some time next week. I will return here to post a brief link.

Thanks to all you regular readers for your ongoing interest and support. I wish everyone a very happy Thanksgiving!

What If Abortion Lost Its Power as a Divisive Issue?

2011-10-26T08:48:00.000-04:00

In my writing on reproductive ethics—here, in my book, and elsewhere—I've deliberately avoided writing too much about abortion and pro-life vs. pro-choice arguments. I think that traditional pro-life and pro-choice arguments have only limited utility when we're discussing the ethics of IVF, preimplantation genetic diagnosis, prenatal testing, and other topics related to reproductive technologies. I've observed that when people focus almost exclusively on traditional pro-life arguments (the sanctity of embryonic life) or traditional pro-choice arguments (reproductive freedom for women), they tend to discount or fail to recognize the many other ethical concerns with reproductive technology, and make oversimplified arguments for or against use of that technology. (I've written more about this observation here and here.)

But abortion is on my mind this morning because yesterday, for the second time in two months, a company I was working with decided they could no longer work with me because I do not hold traditional pro-life views. (You may recall the first time my being a pro-choice Christian was a problem.) This time, a web design firm that I've been conversing with for a couple of months about designing my author web site and migrating my blogs to WordPress decided they couldn't work with me. While their public information makes clear that they focus on building sites for Christian authors, nowhere in that information did they note that they focus on working with pro-life authors. Thirty or so minutes into a great phone conversation with the head of the company—a congenial conversation in which I was increasingly sure that this company was a great fit for what I needed, and in which we were down to talking details of where I send my first payment, the project timeline, and which of their designers I would work with—did he realize that I don't advocate a pro-life ethic in my work. He told me the company cannot work with me. So for the second time in as many months, I was left high and dry by the unexpressed expectation that "Christian" is synonymous with "pro-life."

Companies, like this web design firm and the magazine I used to work for, have every right to decide on their target audiences and niche markets, and to focus their energies on a pro-life audience. The problem is that neither of these companies made their expectation of a pro-life ethic clear up front, despite that ethic being so central that it determined whether or not they could work with me. A little more proactive transparency would be nice, along with recognition that devoted Christians can indeed be pro-choice.

These recent experiences have made me even more frustrated than I used to be about how divisive the abortion issue is, particularly in political and religious discourse. What would it take for us to move past this division? What would it take for abortion to lose its divisive power?

CNN writer David Frum answers that question in this article, in which he compares abortion to prohibition, which was an equally divisive issue for politicians and the culture at large in the early 20th century. Frum argues that prohibition lost its power as a defining cultural issue for three reasons:

1. When prohibition advocates eventually got their way, the legislation was a failure. Even supporters recognized it as such.
2. The problem prohibition was designed to address has dwindled. Americans don't drink nearly as much as they used to.
3. Finally, "drinking and non-drinking are no longer so intimately associated with other ethno-cultural divisions within American life. As alcohol ceased to be a cultural symbol, the appropriate regulation of alcohol ceased to be an ideological issue. When alcohol regulation flared up again in the 1980s, during the debate over stricter punishments for drunk driving, the debate never turned into a culture war because 'alcohol' was not code (as it had been a century before) for a dozen other identities and grievances."

That last point is of particular interest to me in its relevance to the abortion issue, because of how one's stance on abortion so often becomes code-speak for so much more, such whether you are a "real" Christian. Christians disagree about many, many other social and political issues, but abortion (along with homosexuality) more often becomes a litmus test of one's faith.

Frum argues that, even if abortion never gets a legislative trial as prohibition did, abortion could potentially lose its divisive power if the second and third circumstances come about. He notes that the number of abortions is already declining, and "we may expect that it will continue to decline as contraceptives improve and attitudes to out-of-wedlock birth become more accepting, and as younger generations increasingly reject abortion as an acceptable resolution of a pregnancy."

Frum concludes with this observation:

What about condition three? Alcohol became central to American politics at a time when Americans were arguing whether the country should be rural or urban, a farm economy or industrial, and whether Catholics could ever become good Americans. As those arguments lost their intensity, so did the alcohol issue. Abortion became central to modern politics at exactly the same time as Americans were arguing over sexuality generally, over the status of women and the rights of gays.

I think it's a good guess that if we come to a new consensus about the status of women -- absorbing and digesting the sexual revolution of the 1960s and the feminist revolution of the 1970s into a new dispensation more comfortable with both women's equality to men and their differences from men -- disagreements over abortion will come to matter less. Such disagreements won't disappear, any more than we've seen the end of debates about whether bars should open on Sundays. But the disagreements won't matter so furiously much as they now seem to do.

This is one of the most useful, and hopeful, discussions of the abortion issue that I've read in a while. I look forward to a time when Christians can talk openly—and even (imagine!) work side by side with each other—even if we hold different views on abortion.

In a few weeks, my friend Amy Julia Becker will publish a series of blog posts in which a pro-choice Christian (me) and a pro-life Christian (one of my former colleagues at Christianity Today) will both explain why we hold the views we do, and respond to each other's questions. We hope to show that it's possible to hold passionate and dedicated views on abortion while also respecting and working with Christians who hold the opposite view. My co-writer is vehemently pro-life; she has spent time in a jail cell as a result of anti-abortion protesting. And yet she recognizes me as a sister in Christ, a friend, and a colleague. Her stalwart friendship and support over the past couple of months have embodied the love of God, and I am so pleased to be part of this blogging project with her and Amy Julia.

How would things change if abortion lost its power as a divisive issue? First of all, maybe I could stop writing blog posts about people rejecting my work because I don't subscribe to a narrow expectation of what real Christians believe. But more important, maybe our political and religious discourse would soften a bit, maybe Christian unity could move a few baby steps closer to reality. Wouldn't that be something.

Looking for a Speaker for Your Church/Book/Parent/Student Group?

2011-10-21T05:00:00.006-04:00

So...I already have two speaking engagements on my calendar for the spring, to talk about my new book No Easy Choice, and about Christian perspectives on reproductive technology in general. OK, so the engagements happen to be at my current church, and my former church. But it's a start, eh?

Since many groups are setting their spring calendars now, I'm seeking opportunities to talk to church groups, book groups, parents' groups, student groups, or other gatherings of people who would be interested in talking about reproductive technology and the ethical concerns it raises for Christians. Below is some information about what I can offer to your group. Please e-mail me at 5dollars [at] comcast [dot] net if you'd like to set something up! I am looking for both local opportunities and for possibilities farther afield.

No Easy Choice is part memoir and part discussion of the ethical questions surrounding reproductive decision-making, particularly the use of reproductive and genetic technologies such as in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). As a Christian who made my own difficult decisions about whether or not to have biological children given that I have a disabling genetic bone disorder, I address the ethical questions from a faith perspective. The book is not ideological; it does not argue for a certain perspective or tell readers what they should think or do. It provides stories, information, and reflections to encourage readers to do their own thinking on the moral questions raised by reproductive technology.

No Easy Choice is accessible for anyone interested in ethical questions and modern reproductive decision-making. While people with an academic background in ethics, theology, or medicine are among the target audiences, it is not a scholarly book and is appropriate for non-academic audiences. Audiences do not have to be explicitly Christian, although I wouldn’t recommend it for people who are openly hostile to religion. A group including people of varied religious backgrounds would be an appropriate audience; an explicitly atheist group would not.

I’m interested in speaking to both formal groups at churches, conferences, schools, and organizations, and more informal gatherings of people interested in challenging conversation about some key moral questions of our time, such as local book groups or parents’ groups.

I can gear talks to any adult age group, from college students up to senior citizens. Although people of childbearing age are an obvious target audience, I've found that people from other age groups are very interested in learning more about the ethical questions raised by reproductive technology. For college students and young adults, the topic is relevant as they think about future decisions concerning career and family, as well as current decisions about contraception. A number of people who are past childbearing age have told me that they are interested in the topic because their adult children are dealing with difficult reproductive decisions.

For church or other large groups, I am available for both one-time presentations (30-45 minutes of my speaking followed by audience questions) or a more intensive series of several classes (ongoing classes would only work for local groups, of course).

For smaller gatherings, I can speak for a short time, take questions, participate in a book group discussion, or just be available to sign books and answer questions one-on-one.

HIgher Egg Donor Payments, a New PGD Technique, and Giuliana Rancic

2011-10-20T08:59:00.000-04:00

Lots of interesting reproductive news this week. Here are a few of the stories making headlines:

In Britain, the regulatory body tasked with overseeing assisted reproduction has agreed to raise egg-donor compensation, from a former level of £250 (plus expenses) to £750. The Human Fertilisation and Embryology Authority (HFEA) wanted to strike a balance between fair compensation for women, who undergo significant medical procedures to donate eggs and take on the risks associated with high doses of fertility drugs and minor surgery, and keeping payments low enough to ensure that women will donate for altruistic and not monetary reasons. This change has several implications. First, low egg-donor compensation has been a driving force in bringing British women to American clinics for IVF treatment, because here they can access a much larger pool of egg donors. It will be interesting to see whether this change influences this type of fertility tourism. Second, the change highlights the muddled relationship among gamete donation, altruism, and compensation. There seems to be much more discomfort around the altruism/compensation relationship for egg donors than for sperm donors. Last week, I wrote about a study showing that egg donors more often cite altruism as their motivation, while sperm donors cite compensation. Men who donate sperm, including the "super-spawners" who have made headlines recently, have obvious financial motives for their donations. When was the last time you heard a sperm donor say, "I just want to make a couple's dreams come true?" But clearly, compensation is also a significant factor influencing egg donors; I don't think American women are more altruistic than British women. They are just paid a lot more. Yet we're much less comfortable with the idea that women would donate eggs for money. Perhaps because the risks are so much greater for egg donors than sperm donors, so it's obvious that women are risking their health to pay their college tuition. Perhaps because we expect women to be more empathetic and selfless than men. Probably a little bit of both.

A New Jersey fertility clinic has released results of a study showing that preimplantation genetic diagnosis (PGD) is much more likely to lead to successful conception if the embryo is biopsied on day 5 after fertilization, rather than day 3. In PGD, embryos are usually biopsied on day 3 after fertilization, when the zygote consists of 6 to 8 cells. Clinicians remove one or two cells from the fertilized egg and test those cells for whatever genetic mutation the parents are testing for. By day 5, the fertilized egg (called a blastocyst now) consists of several hundred cells. So when the biopsy occurs at this stage, a far smaller percentage of cells is removed. The New Jersey clinic compared pregnancy results of day 3 vs. day 5 biopsies, and found a higher pregnancy rate for day 5 biopsies. When I did PGD, our biopsies took place on day 3, and this is still the most common method in fertility clinics worldwide.

Finally, E! News anchor Giuliana Rancic (married to the first-ever Apprentice winner Bill Rancic) has publicly shared her struggles with infertility, miscarriage, and IVF. Now, she has announced that testing required for her next round of IVF treatment revealed that she has a treatable form of breast cancer. (I could not find an article identifying the exact type of cancer, but from the treatment plan—surgery followed by six weeks of radiation—it sounds like she likely has DCIS, which is the cancer I had last year.) In the wake of this news, medical experts have stressed that "based on the best evidence, there is no clear link has been between IVF and breast cancer." This reminded me of the film Eggsploitation, which I reviewed after watching it with some friends last spring. The film, which makes a case for more research into the long-term health consequences of egg donation, implies a direct causal link between fertility treatments and cancer. The film announces in grave tones that one egg donor died of colon cancer (the narrator doesn't say the treatment caused the cancer, but by including that information, the filmmakers apparently hoped to make us think it did). In another scene, an egg-donor tells us that she is sure her breast cancer resulted from her egg-donation experience, because she had no family history of breast cancer. Well, neither do the majority of women who get breast cancer. And just because a patient is sure she knows the reason for her ailment doesn't make her opinion fact. While I heartily support the need for additional research into the long-term health effects of fertility treatment, both for patients and donors, it's important that we advocate for quality science rather than falling back on junk science. So while I'm a little weary of Giuliana Rancic's name showing up in my Google "in vitro fertilization" alerts day after day, I'm glad that her announcement is setting the record straight on the current state of research into the cancer/fertility treatment link. It's certainly possible that future research will reveal such a link, but for now, the evidence just isn't there.

Some Early Responses to "No Easy Choice"

2011-10-18T05:00:00.007-04:00

I'm taking a break from a final proofread of my book galleys to share what has been the most humbling (and fun) part of becoming a book author: the responses from endorsers. My book is now available for pre-order on Barnes and Noble, Amazon, and The Thoughtful Christian. I'm also starting to line up some speaking engagements for the late winter/spring and will be posting some information about that at a later date. In the meantime, here are a few examples of what keeps me going when the writing is hard...

“Ellen Painter Dollar is a consummate storyteller with a consuming story to tell. She is also a gifted journalist. In No Easy Choice, she has combined those skills to produce a gripping account of her family’s engagement with one of the pressing questions of our time: What and where is the Christian interface between humanity and the bio-engineering we can—and now do—exercise on ourselves, our children-in-the-making, our species? Chock full of informed and candid insights, this one is a page turner.”
—Phyllis Tickle, author of The Great Emergence: How Christianity Is Changing and Why

“I am not at all sure I agree with everything in this book on the challenges of conceiving and parenting well in our age of technology. But I don't need to—because I am quite sure that reading it has made me better informed and more compassionate, and perhaps, please God, wiser. I am grateful for Ellen Painter Dollar’s skill and honesty as a writer, and moved by her story that is so clearly marked by truth and grace. I urge everyone who cares about Christian faithfulness in our time to read, ponder, and share this book.”
—Andy Crouch, author of Culture Making: Recovering Our Creative Calling

“[No Easy Choice] is much more than memoir and more like an extended ‘case study,’but not one written by a health care professional or clergy in training. Rather, it turns the tables, and is written by the ‘case’ herself, a parent of faith carrying a very risky gene who is trying to deal with the worlds of science, theology, and culture. I learned a lot and felt honored to be invited into the intimacy and capacity to deal with that wider intersection that happens at the beginning of life itself.”
—William C. Gaventa, Associate Professor, The Elizabeth M. Boggs Center on Developmental Disabilities , UMDNJ-Robert Wood Johnson Medical School, and author of Spirituality and Intellectual Disability

“No Easy Choice is a painfully wise book about the pain of having children whose life will be filled with pain. It is also a book of hope because its author never tries to say more than can be said about why some children are so born. This is a must read, not only for those considering prenatal genetic diagnosis and intervention, but for all concerned with the ethics of PGD. It’s a terrific book.”
—Stanley Hauerwas, Gilbert T. Rowe Professor of Theological Ethics, Duke Divinity School, and author of God, Medicine, and the Problem of Suffering

Parents' Only Job is to Love Our Children Today

2011-10-17T09:14:00.000-04:00

A beautiful, heartbreaking New York Times essay titled Notes from a Dragon Mom is making the rounds on Facebook and Twitter today. Writer Emily Rapp writes about parenting her young son, Ronan, who has Tay-Sachs disease, a degenerative condition that means he will certainly die in his early years. Rapp notes how profoundly this alters the usual future-oriented focus of parenting. Most parents think long, hard, and often about how our parenting choices—what our children eat, do, and learn—will affect their chances of growing into healthy, successful adults. For Rapp, such concerns are irrelevant. She notes that "parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."

I won't try to summarize this essay beyond this brief introduction. It is worth reading in full (it's not long). I'll just note a couple of things that are particularly relevant to this blog. First, Rapp underwent prenatal diagnosis and twice was told the test for Tay-Sachs was negative. This echoes my friend Amy Julia Becker's experience in her first pregnancy, in which a high-level ultrasound supposedly indicated that her baby definitely did not have Down syndrome, when actually she did. These stories are a useful (and perhaps uncomfortable) reminder that, no matter how much we want prenatal diagnosis to predict what the future holds, its utility and accuracy are limited.

Second, Rapp echoes many of my thoughts as the mother of a child with a genetic disorder. Of course, the disorder that I and my daughter live with is very, very different from Tay-Sachs. It's not fatal for one thing. I have every reason to believe that my daughter will have a bright, full, and successful future. There is no doubt that Rapp has had a very, very different mothering experience than I have.

But I've often thought that OI—the genetic bone disorder that I and my daughter have—has been the thing that has most affected what kind of parent I am. OI is a capricious, unpredictable disorder. Two of my daughter's worst fractures resulted from a scooter accident, but then there was the time she fell in our living room because her leg broke mid-stride; she broke and then she fell. When I was young, I once broke my femur when I sat down on the floor, tucking my legs under me. Of my daughter's 11 broken bones, all except those that occurred in the scooter accident occurred at home, in the living room or a bedroom, during some mundane activity—walking from one end of the room to the other, putting on pajamas, dancing with her sister. Ultimately, there is nothing I can do to protect her from fractures. It doesn't matter what she eats or what limits we put on her activity. After all, what are we going to do? Install grab bars on every wall? Tell her she can't walk?

So while of course I try to feed my kids healthy food, instill important safety rules, and support their interests in music, art, and sports, I've also understood from the beginning that there's an awful lot beyond my control as a parent. Despite the rampant cultural pressure on parents to do all the "right" things to ensure our kids' health and success, nothing we do guarantees that our children will grow into happy, healthy, productive adults. That realization can be depressing. Or it can be freeing. It forces us to engage with gratitude with the children we actually have (rather than those we expected to have), and to respond to them based on who they are and what they need from us today, rather than always thinking ahead to how today's actions will affect their future.

Rapp concludes her essay with this: "Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."

Fertility Medicine as Big Business

2011-10-14T14:52:00.000-04:00

One of my repeated rants about news coverage of fertility medicine is that it tends to be overly focused on anecdote and emotion. Tabloid-worthy stories—such as the Nadya Suleman "Octomom" story or the occasional "Win a Baby" promotion whereby a clinic (or recently, a radio station) holds a sweepstakes with IVF treatment as the grand prize—attract interest and some outrage, and then get upstaged by the next dramatic news story. In much news coverage of fertility medicine, happy endings (overjoyed parents with healthy babies) overshadow ongoing ethical concerns.

But I wonder if the news media may finally be waking up to some of the larger, increasingly complex ethical concerns raised by reproductive technology. Just this week, I've read several articles focused on the corporate, profit-driven nature of reproductive medicine, and arguing that the economic realities of fertility medicine deserve more attention.

Several articles responding to a Style Network show about "super-spawners" (sperm donors who contribute their genetic material to dozens or hundreds of children) argue that the corporate nature of gamete donation deserves more scrutiny. At Biopolitical Times, for example, Emily Beitiks notes that the issues raised by such sperm donors go far beyond the logistical problems that many people focus on, such as the chance that half-siblings will unwittingly become involved in incestuous relationships. Beitiks argues:

there are certain things that the numbers alone do not capture. Donor children have raised many concerns around the right to knowledge of one’s genetic heritage that are relevant regardless of how many half-siblings one has. In addition, the economic forces behind the large number of offspring from a single sperm donor are worth considering. Neither Style Exposed nor most of the media coverage has tapped into these deeper questions. We need to move past the dizzying numbers of offspring and half-siblings, and consider why this is happening. While fertility clinics and sperm banks make families possible for people who otherwise could not have them, their practices are for better or worse motivated at least in part by profits as baby-making has become a multi-million dollar business. It makes economic sense to use the same sperm donor repeatedly, especially if his traits are appealing and marketable.

In other words, gamete donation and fertility medicine operate under the same sort of efficiency measures that govern other corporate concerns. If a sperm donor is "proven"—if he possesses traits that appeal to prospective parents, if his sperm have been used in a number of successful conceptions—then using his sperm again and again makes economic sense for the clinic, the clients, and the donor. But at what cost? In the Style Network show, one super-donor's fiancée was obviously troubled by the knowledge that her husband-to-be already has several dozen biological children in the world. And adult children conceived via gamete donation are increasingly speaking up about their need to know more about their biological and genetic heritage.

Another expanding corner of the fertility industry—Indian surrogacy—has likewise responded to market pressures, growing far faster than clinics, governments, patients, and others can consider the moral questions it raises. Because hiring an Indian surrogate via an Indian fertility clinic is far less expensive than accessing the same services through a U.S. clinic, surrogacy is becoming accessible even to people without a lot of wealth, thus increasing the number of potential clients. As demand for surrogates grows, so do concerns about how Indian surrogates are recruited, treated, and compensated. As American journalist Scott Carney notes:

Before India, only the American upper classes could afford a surrogate. Now it’s almost within reach of the middle class. While surrogacy has always raised ethical questions, the increasing scale of the industry makes the issue far more urgent. With hundreds of new clinics poised to open, the economics of surrogate pregnancy are moving faster than our understanding of its implications.

I was tempted to title this post It's the Money, Stupid. I didn't, but it seems that perhaps the news media and others are finally recognizing that ethical concerns with fertility medicine go far beyond anecdotes about people who make extreme choices, or nuts-and-bolts health concerns, such as whether IVF-conceived babies are healthy (a question that is still open; see this article about a potential link between IVF and rare genetic disorders) or whether half-siblings will unknowingly get romantically involved. These are important questions. But in our market- and consumer-oriented society, big business tends to act first, adopting practices that improve efficiency and profit, and altering practices for ethical reasons only when the media and public become sufficiently aware of all the ways in which profit motives can undermine human welfare. When it comes to fertility medicine, the welfare of many, many people is involved—prospective parents, much-wanted babies, gamete donors, surrogates, and the families of donors and surrogates. An important step in protecting the welfare of all involved is recognizing that, no matter how altruistic clinicians' motives may be, no matter how much pain infertility causes and how effectively reproductive medicine can help ease that pain, no matter how beautiful and beloved IVF-conceived and surrogate-born babies are, fertility medicine is clearly big business with a significant profit motive.

Sperm and Egg Donation: A News Roundup

2011-10-04T10:30:00.001-04:00

I've come across a number of interesting articles this week, all concerning egg and sperm donation. Here are summaries and links for further reading.

Jewish Perspectives on Donor Anonymity

A commenter to last week's posts on Judaism and reproductive technology asked:

Have you seen any statements about anonymity of gamete donors? or reporting to children (age appropriately) the story of their birth and conception? Does the gamete, especially when donated, have a history or is it purely anonymous?

Because tradition asserts that a child is Jewish if his/her mother is Jewish, whether or not an egg donor is Jewish is of primary concern. Some rabbis have argued that if the biological mother (the woman who gives birth to and raises the baby) is Jewish, the baby will gain its Jewish identity from her, because her contribution to the child's life is more visible and proven than the egg donor's contribution. Whatever the determination of who the child's mother is, however, because the Jewish identity of both egg donor and gestational mother are central concerns, completely anonymous donation (in which the donor's Jewish identity is unknown) raises major concerns.

As far as sperm donation, in general, rabbinic authorities have been more willing to accept artificial insemination using the husband's sperm, rather than anonymous sperm from a donor. Some authorities have argued that the child's father is always the person who provides sperm, and that therefore the infertile father who raises a baby conceived via donor sperm is not actually the child's father.

There is a useful article at the Jewish Virtual Library summarizing the complex considerations involved in gamete donation. Because traditional Judaism places great emphasis on children's identity based on their parents' identity, anonymous gamete donation poses a number of problems for traditional Judaism. The egg's or sperm's "history" does indeed appear to matter. I have not yet come across any uniquely Jewish voices on when and how to tell a child about his/her conception.

Egg and Sperm Donors Recruited Differently

In a Salon interview, Yale sociologist Rene Almaling discusses some fascinating differences between how female egg donors and male sperm donors are recruited, as well as their attitudes toward their donation experience. For example, egg donor recruitment emphasizes altruism (that the donor will be helping to make another woman's dream of parenthood come true) while sperm donor recruitment emphasizes financial compensation. Similarly, egg donors are more likely to talk about their experience as a charitable act of compassion, while sperm donors are more likely to say they did a job for which they were compensated. Almaling also points out the disconnect between language and reality: We talk about gamete "donation," but in truth, gamete donors aren't donating anything. They are selling their sperm and eggs, often for big bucks. In fact, clinics and sperm banks have seen significant increases in people expressing interest in donating their gametes in recent years, when the American economy has been in trouble.

Truth-Telling is Important, But So Are Rules

In a Wall Street Journal op ed, Holly Finn describes how she and a friend, both undergoing IVF with donor sperm, discovered that they had both seriously considered the same donor. Finn was unsettled by the very real possibility that she and her friend might have unknowingly raised half-siblings, who would have likely seen each other regularly because of their mothers' friendship.

Finn goes on to argue that it's high time for our culture to let go of secrecy and taboos around assisted reproduction and gamete donation, implying that honesty would prevent the sort of "accidental consanguinity" that she and her friend nearly accomplished. She says,

The children of sperm and egg donors are a growing percentage of our population. Many believe that this shifting reproductive scene requires governmental regulation, and it may. But people find ways around the law. This week in the U.K., where the number of children per donor is strictly limited to 10, a man was discovered to have fathered 17 children. What's really needed now is something more effective than an edict: honesty.

I agree with Finn that honesty is important, and that parents' efforts to keep their children's genetic origins a secret can lead to all sorts of serious problems. I once read an account by a genetic counselor working with a couple who used donor sperm to conceive a baby. The couple, however, didn't fully understand the genetics of eye color. They discovered during a conversation with their genetic counselor, several months into the pregnancy, that given the donor's eye color, their baby could possibly have an eye color that would be impossible for him/her to have if the infertile dad was the genetic father. The couple, planning to keep their child's conception via donor sperm a secret, chose to abort the baby, rather than risk someone with knowledge of genetics noticing that their child could not possibly be the father's biological child.

But even though people certainly find ways around the law, I think we need government regulation of the gamete donation industry as well as parental honesty. Otherwise we'll just continue to foster an environment in which reproductive decisions are completely ruled by parental choice. We can encourage parents to make choices that are best for their children, including being honest about their genetic beginnings. But knowing that some parents will make troubling choices, as will some gamete donors (who, given the data I cited above, are clearly motivated in part by money), it's time for tighter regulations to constrain those choices.

Book Review: A Good and Perfect Gift by Amy Julia Becker

2011-09-30T09:54:00.002-04:00

My friend and colleague Amy Julia Becker has just released a lovely memoir titled A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany House). It chronicles the first two years of her daughter Penny’s life, when Amy Julia, her husband Peter, and their family and friends struggled to make sense of the practical, spiritual, and emotional questions arising from Penny’s diagnosis of Down syndrome a few hours after her birth.

A Good and Perfect Gift doesn’t have a message; it tells a story. Amy Julia chronicles her journey from disbelief, denial, anger, and grief to acceptance, joy, and gratitude for her daughter, She comes to realize that, “She wasn’t a mistake. She wasn’t a Down syndrome baby. To us, she was no longer even our-daughter-with-Down-syndrome. She was just Penny.” But our stories are not linear. We don’t reach a level of wisdom and then dwell peacefully in a place of understanding forever.

Yes, this book has a message, I suppose. A few messages, actually. That our cultural belief in intelligence as a prerequisite for a meaningful life (a belief that the book-loving, studious, Princeton-educated Amy Julia realized she held in spades) is flawed. That children with disabilities are not pawns in God’s plan to teach their parents and others necessary life lessons about how to be more loving and accepting. That improvements in care of children with Down syndrome—they usually live with their families instead of in institutions, receive early intervention services, and receive educational support, often in mainstream schools—have led to measurable gains in IQ and function. This syndrome, which is so universally viewed as incompatible with a good life that around 90 percent of women who discover they are carrying a baby with it terminate their pregnancy, is often not nearly as disabling as it used to be.

But those messages, the lessons Amy Julia learns from life with Penny, come in fits and starts. They are not neatly resolved by moments of revelation, after which life is easy and straightforward. Amy Julia realizes that she needed to learn that being highly intelligent and articulate are not necessities for a full and meaningful life. But when Penny proves quite capable of communicating via first signs and then speech, when she becomes a book lover just like her mom, when she meets many intellectual developmental milestones at similar ages to her peers, Amy Julia pushes back against friends questioning her faith in Penny’s inherent intelligence. They wonder if Amy Julia is too hopeful, if she is forgetting her previously stated insistence that intelligence doesn’t matter so much after all. Amy Julia wanted to

protest that I had come to accept that Penny’s intelligence would be different from mine, that IQ wasn’t any way to measure a person’s worth, that I really didn’t care what school she attended or what grades she got. I wanted to protest that I knew the reality of Down syndrome in far greater detail than any of them—her floppy limbs and difficulty producing consonant sounds and the hearing deficit and raspy voice and all the rest. But I also wanted to protest that Penny solved problems. She communicated. She loved books and music and people. I wasn’t willing to argue about it, but I also wasn’t willing to deny the reality that my “mentally retarded” daughter was smart.

So what I mean when I say that this is a story, not a message, is that Amy Julia is honest about the ongoing tension between hope for what could be, and gratitude for and acceptance of what is.

In my favorite passage, Amy Julia meets a mother, Jeanie, whose adult son died many years ago. In his honor, Jeanie and her husband founded a scholarship that allowed many people, including Amy Julia, to receive seminary education. But Jeanie admits that, despite all of the good that has come from her son’s death, she would give it all up to be able to run her fingers through her aging son’s gray hair. For Amy Julia, Jeanie’s words

acted as a balm. They gave me permission to keep asking questions and move forward in faith at the same time. The thing was, I could see God’s hand, God’s work, God’s care in Penny’s life… And yet there was this pervasive sadness in me, this resistance, this voice that cried out no. I knew that we were privileged to have her, but it seemed our privilege came at her expense. She was the one with the body that was vulnerable and limited. She was the one with the shorter life expectancy, the one who might never live independently, who probably wouldn’t have children of her own. How could I hold these things together, the gratitude and the loss? The hope and the fear?

I don’t know how we are to do that, but in Amy Julia’s case, the effort of figuring it out has produced a beautiful, thought-provoking book.

I got special delight out of reading a memoir about characters I’ve actually met. Having corresponded with Amy Julia for several years now, and having met her, Peter, Penny, and their two younger children this past summer, I particularly resonated with some of Amy Julia’s descriptions of Penny. When she described how small Penny is for her age, I remembered how light she felt when I lifted her up onto a counter stool at their beach house this summer. When Amy Julia wrote about Penny’s learning to speak and the inflection with which she says, “Wow,” I could call up the image of Penny with her wide green eyes saying that word. I’ve never before read a memoir about people I know, so that gave this book a special resonance.

But you don’t have to know the Beckers to become caught up in this story of their awakening to the gift of life—a gift to be received with gratitude no matter how many chromosomes or how much physical and intellectual capacity it comes with— and the particular gift of their daughter’s life. Amy Julia’s honest story of trying to make sense of the life her family shares, and the way she learned to delight in the daughter she was given, raises questions that are vital to this 21^st century, in which technology offers us so many ways to strive to make life live up to our expectations. Amy Julia found that though her initial expectations for Penny went unmet, Penny’s life has brought a bounty of unexpected gifts.

To read what others are saying about A Good and Perfect Gift, check out the Patheos Book Club.

Jewish Perspectives on Reproductive Technology – Part 2

2011-09-27T10:44:00.000-04:00

This is the second of two posts on Jewish perspectives on reproductive technology. I posted Part 1 yesterday.

Central Role of Procreation in Jewish Theology

Judaism emphasizes the procreative purpose of marriage—its role in fulfilling God’s command to be fruitful and multiply—to a greater extent than many Christian denominations do. Having children is one of the 613 mitzvot (commandments or rules) that Jews are to live by. Persecution of Jews, and tragically successful efforts to eradicate entire Jewish populations, has reinforced an emphasis on maintaining Jewish identity and community by having Jewish children.

Jewish authorities, therefore, frequently view assisted reproduction as a tool to help Jews fulfill God’s procreative purpose for marriage. They have few reservations about separating the reproductive process from the sexual union of married spouses (which is a primary concern underlying Roman Catholic opposition to reproductive technology).

Jewish Genetic Identity

Ashkenazi Jews are more likely than other genetic populations to pass on a number of serious, sometimes fatal, recessive genetic disorders. Tay-Sachs disease, a progressive neurological disease that usually leads to death by age four, is the most well-known of these disorders. With first-hand knowledge of how Tay-Sachs and other recessive disorders can affect families, Jews have largely embraced the use of preimplantation genetic diagnosis (PGD) and other types of genetic screening to help eradicate such disorders.

Dor Yeshorim provides an example of Jewish willingness to embrace genetic screening to eradicate diseases disproportionately affecting Jewish populations. Dor Yeshorim is a Brooklyn-based organization that has helped lower the incidence of Tay-Sachs disease and other recessive genetic disorders (cystic fibrosis, Fanconi anemia, etc.) through a proactive screening process. Young, unmarried Jews consent to genetic testing to identify whether they carry genes for any of a list of recessive disorders. If a couple determines that their relationship might lead to marriage, they can call a special phone number, type in a PIN, and find out if both the man and the woman carry any recessive genes in common. If they do—meaning their children would have a 25 percent chance of inheriting the disorder in question—it is recommended that the couple end their relationship. Many couples do just that.

Jews largely embrace genetic screening despite their history of being targeted by eugenic policies. Eugenics refers to the practice of selective breeding. In positive eugenics, people with desired traits are encouraged to procreate (e.g., the Lebensborn program in Nazi Germany, which provided medical care and housing to Aryan women, including unmarried women, to encourage them to have babies). In negative eugenics, people with traits perceived as undesirable (whether or not those traits have an actual genetic basis) are discouraged or prevented from procreating or contributing their genes to a population (e.g., forced sterilization of people with mental disabilities, immigration policies barring people of particular ethnic backgrounds that are perceived as undesirable). In Nazi Germany, of course, eugenic policies went even further, with state-sponsored murder of people with traits perceived as undesirable—Judaism, homosexuality, mental illness, or Roma (“gypsy”) background.

So while Jews have been the target of eugenics policies, most notably but not exclusively in Nazi-occupied Europe, they have also embraced reproductive genetic screening, which critics sometimes refer to as a “new” or “voluntary” eugenics.

Jewish scholars and writers seem to understand that there really is an important difference between individual parents using genetic screening to have babies who will live past their fourth birthdays, and a cultural movement to use genetic screening to rid society of “undesirables.” Of course, as I’ve written before, one of the trickiest things about reproductive ethics is that reproductive decisions are both highly personal, and have significant public consequences. It’s not always possible to predict when thousands of private reproductive decisions will ultimately lead to significant cultural changes.

The Jewish embracing of genetic screening, combined with their history of persecution under eugenic policies, can perhaps provide an example of how to draw lines between acceptable and unacceptable uses of genetic technologies. Our culture needs to be willing to say, for example, that using PGD to ensure that a child doesn’t suffer and die is acceptable, but using PGD to ensure that parents get a child of the desired gender or with a gene associated with sports success is not.

One Jewish Scholar’s Take on Reproductive Technology

Today’s and yesterday’s posts were inspired by this Huffington Post article about Rabbi Michael Broyde, a law professor at Emory and member of the largest Jewish law court in the nation. In this brief article, Broyde explains how using technology to help people have healthy babies is in line with God’s desires for the world.

I encourage you to read the article in full, but here are a few highlights of Broyde’s perspective.

Broyde rejects the idea (which is a central tenet of Catholic views of reproductive technology) that use of artificial insemination (and presumably other gamete-donation procedures) is somehow akin to adultery, because it often involves a third party in reproduction and separates the sex act from conception. Broyde insists that, absent sexual misconduct, artificial insemination is simply not a moral or religious wrong.
Broyde argues that finding new ways to eradicate old diseases, including use of genetic screening, is part of God’s call on his people to “fix the world.
Broyde notes that use of reproductive technologies usually stems from significant suffering: “Artificial insemination, surrogate motherhood, this is something desperate people do to have children that they love."

Broyde’s approach is full of common sense, and also echoes the actual experiences of people who use reproductive technologies, who cite the alleviation of suffering (their own and their children’s) as a primary goal, and who scratch their heads at some Christian theologians’ insistence that using third-party reproduction techniques violates their marriages.

But Broyde recognizes that reproductive technology can be abused. He argues that we need to ask whether an assisted reproduction technique violates the sanctity of human life, and whether its use is in the resulting child’s best interest.

I’d love to sit down with Broyde to ask more about how we answer those questions. That last question, in particular, is harder to answer than it appears. Many people would likely argue that it is in the child’s best interest to use PGD to ensure that a child does not inherit a non-fatal disorder like mine, which causes pain, disability, and sometimes social exclusion. But what of those people with disorders like mine who would say that their life is richer because of the suffering they have endured and the accommodations they and others have made that allow them to live a full and rewarding life? What of the argument that, if our culture welcomed people with disabilities as equals and made accommodations just part of the norm, much of the suffering associated with disability would cease to exist? What do we say to parents who argue that ensuring that their child will inherit genes for traits associated with greater success and earning power (e.g., greater height in boys and men) is in their child’s best interest?

I find Jewish approaches to reproductive technology refreshingly straightforward and responsive to the lived experience of people who use that technology. Nevertheless, increasingly sophisticated and available reproductive technology means that even straightforward, responsive answers sometimes fall short. The complex questions raised by developing technology require responses that go far beyond the simple calculus that says that technology is good if it relieves children’s suffering.

Jewish Perspectives on Reproductive Technology - Part 1

2011-09-26T13:30:00.000-04:00

Now that I'm back to blogging after a hiatus, I thought I'd write about a topic I find fascinating (and hope you do too), which is the Jewish perspective on reproductive technology. Christian opposition to reproductive technologies often refers to Old Testament scriptures, from the Genesis accounts that portray God as creator and giver of all life, to the psalmist's observation that God knew him when he was being knit in his mother's womb. Yet many Jews, with whom these scriptures originated, have a much more open and accepting attitude toward reproductive technologies than many Christians do.

Obviously, there is no universal "Jewish perspective." As with Christianity and other faiths, there are different traditions within Judaism, and there are liberal, moderate, and conservative movements. However, Christians should not make the mistake of assuming that Jewish perspectives on reproduction and reproductive technology are divided along liberal and conservative lines that mirror the divisions between liberal and conservative Christians. On the contrary, in my research on reproductive technology, I have found a great deal of consistency among Jewish traditions. (That said, my research to this point has been attentive but not terribly extensive. So I welcome any additional information, particularly from Jewish readers, who are invited to clarify and correct anything I say here.)

Jews of various traditions, including orthodox, conservative, and reform, tend to support use of reproductive technologies that allow people to have healthy children, if they would otherwise be unable to do so because of infertility or family history of serious genetic disease. In many cases, Jewish authorities don't merely support but actively encourage use of these technologies. Israel, for example, has the highest birth rate of IVF-conceived babies in the world, and IVF is provided free of charge to any woman up to age 45 (including non-Jews).

Like Christians, Jews believe that God is the creator and giver of life, and emphasize moral decision-making that respects the dignity of people made in God's image. Psalm 139, with its portrait of God as intimately knowledgeable of individual human beings from conception, is from Hebrew scripture. So why do Jews, including orthodox and conservative Jews, embrace reproductive technologies to an extent that many Christians, particularly conservative Christians, do not? I'll outline three significant differences between Judaism and Christianity that influence Jewish views on reproductive technology: 1) different views of scripture, teaching, and authority; 2) different views of human embryos; and 3) unique characteristics of Jewish theology, identity, and history. I'll address the first two in this blog post, and the third in my next post.

Jewish views of scripture, teaching, and authority. While the Hebrew Bible is central to Jewish faith, when it comes to figuring out how to live ethically, Judaism relies on a broad legal system known as halakha. Halakha encompasses biblical laws as well as the Talmud (a record of rabbinic discussions) and other writings, customs, and traditions. The Talmud and other sources essentially provide an oral law that complements the written law contained in the Hebrew Bible. Thus, Jewish tradition emphasizes a decentralized, consensus- and discussion-oriented process for determining how Jews are to live. As Ari Zivotofsky and Alan Jotkowitz explained in a 2009 American Journal of Bioethics article,* the "dynamic yet precedent-oriented" practice of halakha stands in contrast to the more centralized, authoritative tradition of the Roman Catholic Church and other Christian denominations. Zivotofsky and Jotkowitz explain:

Because there is no one authoritative body or individual, new technological challenges are confronted on multiple fronts until a single, or several, consensus positions are reached. But these are always based on precedent of specific laws, principles, and values. Halakha has developed over the course of millennia across much of the globe without any centralized authority and in periods of poor communication. The product of this seemingly stochastic system is nonetheless surprisingly well structured, internally consistent, and agreed upon by Jews who were widely dispersed and dwelling among disparate cultures. While the starting point is always the Hebrew Bible, which is often cited, it is never the final determination of halakha because it is considered to be only half the story…A contemporary rabbi will typically examine earlier sources in search of analogous circumstances before deciding a point of law. No one will rule without citing the relevant passages from the Talmud, and usually from the early commentaries on the Talmud, and almost always the major codes...This diffuse system will often result in there being more than one acceptable position within Judaism. [emphasis mine]

Compared to Christianity, Judaism offers a significantly different way of "doing ethics." While, again, it's hard to make sweeping generalizations about a faith that encompasses many different traditions, Christians tend to look to some central authority for guidance on moral matters, whether that's the Bible, the Pope, a local pastor, or some combination. While it is impossible to read the Bible (or anything) without interpreting it, many Christians approach modern moral quandaries with a belief in a coherent, overarching Biblical morality that transcends time, place, and individual interpretation. For some Christians, the idea that there could be more than one acceptable moral position is indicative of a dangerous moral relativism. We tend to approach ethical questions with the goal of finding a definitive answer concerning what is right and and what is wrong for Christians.

If it sounds like I prefer the Jewish approach to the Christian one...well, I do. No, we Christians don't have the same oral law tradition. But given the complexity and ever-changing nature of reproductive technologies, and therefore of the ethical questions these technologies raise, a consensus- and discussion-oriented approach that concedes the value of different interpretations seems to be more useful than an authoritative, definitive approach that seeks a single "right" answer. Christian discourse on reproductive technologies—the conversations taking place among pew-sitting Christians, not among bioethicists and theologians—has been hampered by reliance on absolute pro-life and pro-choice arguments, rampant oversimplification of the moral questions these technologies raise, and a focus on deciding whether Christians should or shouldn't use IVF, PGD, surrogacy, sperm donation and other technologies, vs. a focus on asking good questions and providing information, resources, and space for consensus-building.

Different views of human embryos. Judaism does not perceive fertilized eggs as fully human in the way that the Catholic church and many other Christian traditions do. Thus, Judaism does not share Christian concerns that techniques such as IVF and PGD manipulate and/or destroy human embryos. Jewish authorities have laid out very specific timelines of fertilization, implantation, gestation, and birth, making determinations at each stage as to the moral status of the developing baby and the relationship between the baby's moral status and the mother's. Implantation in a woman's uterus is significant, and before implantation, a fertilized egg is not perceived as having independent moral status. Specifically, "A zygote that has gestated fewer than 40 days and has never been implanted into a woman does not have the same legal status as an implanted embryo that has gestated over 40 days."**

It's important to note, however, that although Judaism does not afford unimplanted embryos with the same moral status as many Christian traditions do, Jewish authorities do not allow for unlimited manipulation of embryos. There are relevant rabbinic teachings, for example, concerning both abortion and the discarding of embryos during preimplantation genetic diagnosis. While Judaism typically allows for embryos testing positive for a genetic disorder to be discarded, rabbinical authorities have raised moral concerns about discarding both healthy excess embryos during a normal IVF cycle and discarding embryos after genetic testing to determine non-disease traits (such as sex selection).

Jews have a necessary interest in preimplantation genetic diagnosis (PGD) because Ashkenazi Jews are much more likely than people of other genetic backgrounds to have children with several serious recessive disorders, such as Tay Sachs disease. Jews have also been victims of eugenic policies (i.e., policies designed to rid a population of people with undesirable qualities and genetic backgrounds), most notably at the hands of the Nazis. These and other aspects of Jewish history and identity have influenced Jewish approaches to reproductive technology. I'll discuss these aspects of Jewish theology, history, and identity in my next blog post.

*Ari Z. Zivotofsky and Alan Jotkowitz. 2009. A Jewish Response to the Vatican's New Bioethical Guidelines. American Journal of Bioethics 9:11, 26–30. November 1, 2009.

**John D. Loike, Ruth L. Fischbach, and Moshe D. Tendler. 2009. Jewish Views on the Beginning of Human Life and the Use of Medical Intervention to Produce Children. American Journal of Bioethics 9:11, 45–47. November 1, 2009.

My Book is Available for Pre-Order

2011-09-10T09:06:00.001-04:00

Just wanted to share the link for pre-ordering my book, which will be released in January. This is an exciting moment in my authorial life, and I offer many thanks to all you readers. Thanks especially to all of you who offered words of support, publicly or privately, regarding my firing from Christianity Today. The diversity of folks who expressed support—Christians of many types, people of no faith or a struggling faith, parents who have used reproductive technology, others who have chosen not to use it—confirmed for me the value of this work I have undertaken, and the importance of continuing it despite the challenges of writing within popular and religious cultures so intent on drawing clear lines between "us" and the "other." Thanks to all of you, especially those who "delurked," commenting for the first time to offer support.

On Being Fired from Christianity Today

2011-09-01T13:10:00.003-04:00

I have been fired from the Her.meneutics blog at Christianity Today, where I have been a regular contributor since March 2010.

There is much to say about this, and I will say some of it here, with as much grace as I can muster. This post is going to be longer than my usual, just so you know. Thanks in advance for your indulgence.

First, the facts about what happened:

Last week, I wrote two Her.meneutics posts about the role of personal stories in considering the ethics of reproductive technology, an approach I and others refer to as “narrative ethics.” I am used to having some disagreeable comments to anything I write for Christianity Today. But this time, there were four commenters who were especially and vehemently opposed (disgusted, scandalized, etc.) by what I wrote. They launched a concerted effort to criticize my posts and discredit my entire body of work in reproductive ethics.

If you want to know who these commenters were and what they said, you can read the posts and the comments. You can also Google my full name and filter the results to feature those from the past week, and you’ll get an eyeful (some of it is really, really not pretty). Besides the shameful name-calling, they misread a lot of what I was saying. No, I was not saying traditional ethics is useless. No, I was not advocating moral relativism. No, I was not saying that people should be encouraged to make whatever decisions make them feel happiest, and throw out any ethical concerns that interfere with their happiness. For a while, I tried to explain these subtleties to the commenters, pointing to clear statements in my posts that clearly defied their interpretations. But I finally figured out they were not interested in dialogue. They didn’t perceive me as someone with expertise in this area, a peer with whom they could respectfully disagree. No, they saw me as spouting anti-Christian, immoral views. They saw me as someone who had to be silenced to curtail the damage I’m doing to the faith. It is not possible to debate people like that and get anywhere. I should have learned that by now.

I also became aware last week that top editors at Christianity Today were scrutinizing my two personal blogs. I’ve always known that some of my views are more liberal than those of many (certainly not all) Christianity Today readers. But I (naively, I guess) thought that Christianity Today’s role as a voice for “big-tent” evangelicalism (a term one of the editors used this week) could accommodate my voice, especially because I always took care not to spout some of my left-leaning positions to this audience in particular, and because many readers have expressed gratitude for my approach. I have never intended to use my writer platform to convert people to my positions. I also know that I am far from the only left-leaning Christian who is writing for Christianity Today. Nevertheless, as I became aware of editorial scrutiny, I began to suspect where things were heading.

I received an e-mail late Monday night from Christianity Today online managing editor Ted Olsen. He told me how much he has valued and enjoyed what I have written for the magazine and blog over the past 18 months or so. He told me I’m an “exceptionally gifted writer”—words of praise that I both treasure and find hard to internalize, seeing as they were offered in an e-mail firing me from work I value, work that he and other editors at Christianity Today also claim to value. He explained that I can no longer write for Christianity Today as a “bylined opinion contributor.” The bottom line is that, because I have written on my personal blogs that I am both pro-choice and support gay marriage as a civil right, the editors have decided I cannot write for the magazine on sexual and reproductive ethics (which, of course, is my core topic and the topic of my upcoming book). Olsen wrote:

“CT’s stances on abortion and sexual ethics are not as core to our identity as our theological commitments to, for example, Jesus’ atoning death on the Cross or the reliability of Scripture. But they are nevertheless primary concerns that we feel strongly about. And given the debates within the movement and the larger culture on these questions, it’s important that we not confuse our readers about where we stand.
Let me note that CT doesn’t make its writers sign its statement of faith, let alone a statement of ethical principles. We have no doubt published many writers who are pro-choice and who support homosexual relationships. But they are generally not writing on sexual and reproductive ethics. (News coverage may be an exception.) We also have certain contexts where evangelicals and others with those views have expressed them (for example, a 2008 interview with Jim Wallis). But when a writer’s main work for us is expressing her views on sexual and reproductive ethics as a regular contributor, it does matter what that writer’s views are and what she is expressing in the full corpus of their writing.
As you’ve suggested on the recent Her.meneutics comments thread, you haven’t directly defended abortion or same-sex marriage on our site. But you have directly done so elsewhere, and I think there is a real likelihood of confusing our readers about the commitments of the magazine.
Let me be clear: I’m not siding with some of the blog commenters who attacked your post. We welcome you as a sister in Christ, as a fellow evangelical, and as someone whose work will continue to prod us to think deeper on these issues. But sadly, we will have to end your time as a bylined opinion contributor. Keeping you on would signal that we think these issues remain unsettled and that we want to encourage continued debate on them. Rather, we want to communicate that the debate is how best to act on the evangelical conviction on these matters.”

Well. I’ve been debating how best to deal with this turn of events here on my own blog. I think this decision says a lot about the sad state of our cultural and Christian discourse, about how extreme voices trump gentler, more balanced voices. (Remember the Tiger Mom?) I also remain confused and frustrated, as I have been for my entire Christian adulthood, about why abortion and homosexuality are perceived as issues that require the drawing of firm lines of orthodoxy, while many Christian individuals, publications, and institutions (including Christianity Today) accept and even encourage diversity of opinion on many, many other faith issues. I wonder why, given that I was hired for Her.meneutics as a writer with a clear focus on reproductive ethics, no one thought to consider up front how my opinions about related sexual and reproductive ethics questions might play into that. I am paying a steep price for the organization dealing with these concerns reactively instead of proactively. I may write about these questions more in the future. For now, I’m going to share a few of my reflections on what has happened.

First, I realize that many Christians, particularly those in Christianity Today’s primarily evangelical audience, do not share my views on abortion and sexuality. I’m not going to go into a long explanation of those views here. My positions on these issues are far from resolved. They are a source of ongoing internal debate and external conversation. They also are largely influenced by practical concerns, some of them related to the proper role of government in a secular democracy, rather than theological or moral issues. For some Christians (certainly for the commenters who attacked me last week), the idea that I could fail to see these issues as primarily and solely about morality/theology rather than politics or practicality does not make sense. But for me, the fundamentals of Christian faith are quite simple and straightforward, while how we are to live out this faith is full of mystery, tension, conflict, and unknowns. My Christian faith rests in two simple, straightforward facts: First, that Christ has died, Christ has risen, and Christ will come again. Second, God loves all of us with a boundless love and an everlasting grace. Beyond that, we all have to interpret scripture (which is not nearly as clear on many modern-day issues as many believe, and which is quite clear on other issues, such as divorce, that our modern churches have almost universally chosen to accept) as best we can with our limited human capabilities. Faithful, smart, seeking believers can disagree without eroding the common bonds of our faith. I respect those of you who are pro-life and/or against gay marriage. At least, I respect Christians who hold these views and don’t vilify people who have a different perspective. I hope you can offer me the same respect.

Second, as someone who has one foot in the evangelical world and one in the mainline/progressive world, I have tried to foster mutual understanding between these two ways of approaching our faith. I happened to write a post for the Daily Episcopalian last week that explains how I got to this in-between place. People on both sides of this divide (and, unfortunately, it is often a very real divide) want to put God in a box. Some of my commenters last week insisted that I could not possibly be a Christian and hold the moral views I do. I’m sure that some of my mainline/progressive Christian peers don’t understand why I’ve been eager to write for Christianity Today and align myself with evangelicals. In the eyes of many in mainline/progressive Christians, evangelicals are all a bunch of Bible-thumping, closed-minded, conservative bigots. Writing for both mainline/progressive audiences and evangelical audiences is not an easy thing to do, but I have continued to try, and to push people on both sides toward seeing the “other” as their brothers and sisters, not as some alien species they can’t possibly have something in common with.

The Her.meneutics bloggers are Exhibit A for me on what it looks like to be passionate, smart, caring evangelicals. I wish more mainline and progressive Christians would open themselves to relationships with people like them, to see that evangelicalism is not some monolithic thing, but a rich and diverse group of amazing folks. One of the things I am grieving most is that, for the time being, I will not have regular opportunities to converse with evangelicals and nurture that side of my faith, now that I will no longer be writing for Christianity Today. Of course, I can find those opportunities elsewhere. But I’ll miss doing it alongside my Her.meneutics colleagues, many of whom have become friends.

I commend to you this group of women writers, and want to publicly offer them my deep gratitude, friendship, and appreciation. Sarah Pulliam Bailey, Katelyn Beaty, Amy Julia Becker (read her book!), Anna Broadway, Alicia Cohn, Gina Dalfonzo, Elrena Evans, Jennifer Grant (read her book!), Laura Leonard, Sharon Hodde Miller, Ruth Moon, Enuma Okoro (read her book!), Karen Swallow Prior, Marlena Proper-Graves, Caryn Dahlstrand Rivadeneira (read her book!), Rachel Stone (read her blog!), and Michelle van Loon: It has been an honor to work alongside you. Thank you for your support (and in some cases, your righteous indignation) over these last few days.

Readers: Pay attention to these women. They are brilliant and funny, wise and faithful. My deepest grief over being fired by CT is that I will no longer be part of the daily conversations that occur among this group as we (they) discuss news stories, potential topics for blog posts, and the joys and challenges of being female Christian writers. I am confident that our collegiality and friendship will endure, but I will miss working with them day in and day out.

Third, the Christianity Today editors involved in this decision made very clear that the comments on last week’s narrative ethics posts were not the reason for their decision, and that editors were not in conversation with any of these commenters (with the exception of one, whom an editor rebuked for questioning my qualifications to write for CT publicly on Facebook, instead of privately). Furthermore, those affiliated with CT, both editors and writers, who have commented on this situation have made clear that they see many of these comments as un-Christian, inappropriate, and unprofessional. However, I am deeply grieved (OK, I am pissed) at how this decision will come across in light of those comments, and what this decision appears to say about what CT does and doesn’t value.

The way these commenters chose to engage with me and my post was mean-spirited. Several of them know and support each other, and some Facebook chatter indicates that this was, at least in part, a deliberate and coordinated effort. Their comments were personal and damaging. They not only questioned my opinions as a writer who focuses on reproductive ethics (which is, of course, completely in their rights to do), they questioned my faith, my qualifications, and my morality. They twisted my words and ignored much of what I have written that is actually in line with what they claim to believe. Several followed me over to my own blog, where they continued to spill vitriol. They wrote about my story of using PGD in hurtful ways that painted an inaccurate picture of my PGD journey and how it influences my writing on this topic.

One of the commenters called for me to be “banned” from CT. Her wish has come true. My commenting posse is probably doing a little happy dance as they read this. I expect that they will brush away my and anyone else’s insistence that their ugly comments had nothing to do with this decision. There is no way I can prevent them from seeing this turn of events as God’s retribution on spineless, godless, immoral me. I trust the editors when they say their decision does not reflect agreement with these commenters or stem directly from their comments. But that subtlety will not mean anything to these women or to anyone who is sympathetic with them. I think this turn of events does great damage not just to me, but to CT’s efforts to promote a collegial, respectful discourse on the Her.meneutics blog and elsewhere. Some observers will conclude, rightly or wrongly, that CT chose to listen to narrow-minded, moralistic, absolutist voices over my nuanced, questioning, welcoming voice. And that makes me sad and sick and all kinds of other things.

Fourth, where do I go from here? My book comes out soon, and I’ve gotten tremendously encouraging endorsements from a number of people whose opinions I value a great deal, including Andy Crouch, John H. Evans, Bill Gaventa, Stanley Hauerwas, Ian Markham, Virginia Stem Owens, Phyllis Tickle, and Amos Yong. Soon I’ll be able to share pre-ordering info and a cover shot. This is an exciting time, and I’m so grateful to be working alongside my fabulous book editor, Jana Riess, and the rest of the Westminster John Knox staff.

I’ll be exploring other blogging venues where my politics won’t constrain my ability to write about these vital ethical concerns with other Christians. I’ll be getting an author web site up and running. I’ll continue to blog regularly at the Daily Episcopalian, and of course right here.

The bright side of the last few days has been the encouragement and compliments that have poured in, from other writers, from readers, from Westminster John Knox staff, and even from the very folks who fired me. There are Christians who insist on seeing everything in black and white, and naming all shades of gray as wishy-washy moral relativism. There are a few who are rejoicing today that they brought me down a notch. But there are also many, many people who have asked me to continue speaking from this sometimes uncomfortable spot between conservative and liberal Christianity, and to continue providing lucid, balanced, nuanced, probing coverage of these difficult, complex, ethically fraught concerns for modern Christians. I stake my claim with the latter group, and hope they’ll stick with me as I continue this work.

And one more thing: If any of the four commenters who hounded me last week decides to comment here, your comments will be deleted. If you want to offer an apology for the uncharitable way you behaved (betcha didn’t know I’m a comedian too, huh?), feel free to e-mail me. Your role in these events and this discussion is now over.

How Stories Can Inform Ethical Discourse

2011-08-20T12:56:00.000-04:00

I have two posts over at Her.meneutics this week on taking a narrative (that is, story-based) approach to reproductive ethics. Essentially, I argue that while considering the experiences of people who use reproductive technology for a variety of reasons complicates our contemplation of ethics (because we can't help but be sympathetic to a mom who uses IVF to have a baby after all three of her children are tragically killed, for example), it is necessary. When we confine our discourse to principles, without also talking about people's lived experience, we risk alienating the very people whose decisions we hope to inform. People write off ethics as irrelevant, out of touch.

My post was published in two parts. The first post describes some specific stories that I've been thinking about recently, while the second looks more broadly at a narrative approach to ethics and how it can inform our conversations.

More on the "Two-Minus-One" Pregnancy

2011-08-17T09:07:00.001-04:00

The New York Times cover article on twin-to-singleton pregnancy reductions, which I blogged about earlier this week, has sparked a great deal of conversation here and around the blogosphere. I have a few additional thoughts.

This story has forced me to ponder how my discomfort with twin-to-singleton reductions intersects with various positions I hold on social issues. For example, I support abortion rights. But I find this particular exercise of abortion rights to be abhorrent. Why? For me, the most disturbing aspect of the Times article was how the couples profiled exercised their reproductive rights in a completely reactive way. There seemed to be very little forethought, very little consideration of how the choices they made—to use IVF, to try to have babies at an advanced maternal age—would lead to other choices. The couples were eventually forced to confront their human limitations and realize the futility of trying to exercise control over their childbearing. How might these stories have played out if the couples and those around them—their families, their religious advisers, their clinicians—had suggested that they consider reproductive choice in a proactive way? Perhaps it would have been difficult to anticipate that two lesbian moms would both get pregnant with twins at the same time. But, given the known risks of IVF and the known risks of childbearing at age 45, surely the couple and those they confided in could have anticipated that the process might not go perfectly? That there might be unanticipated complications?

Also, in response to a commenter who felt I was being too harsh when I questioned why the lesbian couple waited 15 years to start a family, I feel compelled to say that, while I support gay marriage, I do not support unfettered reproductive choice enabled by technology for anyone—gay or straight, young or old.

Finally, of all the blog posts spawned by the Times article, I found one at Slate to be the most thought-provoking. William Saletan noted that even pro-choicers find twin reductions troubling, and wondered why. He traced their (our) discomfort to a problem with typical pro-choice terminology, which insists on using clinical terms such as "activated egg," "fetus," and "pregnancy" instead of "baby" to describe the entity being aborted. Saletan notes that, "A fetus you want is a baby; a fetus you don't want is a pregnancy." He goes on:

Reduction destroys this distinction. It combines, in a single pregnancy, a wanted and an unwanted fetus. In the case of identical twins, even their genomes are indistinguishable. You can't pretend that one is precious and the other is just tissue. You're killing the same creature to which you're dedicating your life...That's the anguish of reduction: watching the fetus you spared become what its twin will never be. And knowing that the only difference between them was your will.

The growth of reproductive technology means that parental will plays more and more of a role in whether and how people have babies, and how many and what sort of babies they eventually have. We can't turn back the clock, going back to a time when procreation was almost completely governed by chance, and parents had very little say in how things turned out. But we can insist that parents recognize the role of their will in childbearing decisions, that they ponder the ramifications of reproductive choice, their own limitations, and the consumer aspects of modern technological reproduction proactively. Instead, many modern parents, like those in the Times article, go to great lengths to use technology to overcome barriers to parenthood, and then when things get complicated, throw up their hands and claim the futility of trying to control their childbearing or overcome their very real limitations.

A Troubling Cascade of Choices

2011-08-13T17:26:00.000-04:00

This Sunday's New York Times magazine's cover article is about "two-minus-one" pregnancies—pregnancies with twins in which the mother decides to request selective reduction, that is, to abort one of the fetuses so that she only gives birth to one baby.

This was one of the better Times magazine articles on assisted reproduction. In contrast to the personal narratives of Alex Kuczynski and Melanie Thernstrom (both of whom wrote for the magazine about having children via gestational surrogate), this more objective, journalistic treatment of reproductive technology explored larger ethical issues. The author pointed out that the choice to reduce a twin pregnancy springs from the growing number of choices that parents have in conception, pregnancy, and birth, due to the growth of technologies.

Selective reduction is generally used to reduce pregnancies with three or more fetuses, because high-order muliple pregnancies pose so many health risks to both mother and babies. But doctors are increasingly being asked to reduce twin pregnancies to singleton pregnancies. While some argue that twin pregnancies pose health risks significant enough to justify such reduction, most twin-to-singleton reductions are due to parental preferences, rather than serious health risks. Some doctors do these reductions willingly, arguing that abortion is legal and this is just one more way to exercise that right. Others have decided to refuse these requests because of the moral conundrums posed by aborting a healthy fetus because the parents—who have often gone to considerable effort and expense to have babies using in vitro fertilization (IVF)—don't want two babies.

The cases cited in this article make clear that the choice to reduce a twin pregnancy often stems from other significant, sometimes troubling, reproductive choices. One mother used IVF at age 45 because she wanted another baby, despite already having several children. But she didn't want two babies, so when she became pregnant with twins, she aborted one of the fetuses. A lesbian couple both went through IVF with donor eggs at age 45, 15 years after beginning their relationship. Both became pregnant, one miscarried, and the other had a healthy boy. Wanting a sibling for their son, they both did IVF again. This time, both became pregnant with twins. The strain of having two pregnant moms caring for a young toddler child was too much. One of the partners reduced her pregnancy to one baby. The other eventually miscarried.

In describing how hard it was for two pregnant, sick, exhausted moms to care for a 14-month-old, one of the moms said, "We all think we can conquer the world, but then reality hits you, and you realize you have limitations." When the reporter asked her how she would feel if they ended up miscarrying the sole surviving fetus, she responded, "We’ve talked a lot about it...I’ve come to realize there’s only so much we can control. There’s a point where you just have to let nature take its course."

I came away from reading this article frustrated and sad that several of the couples profiled only pondered their limitations and the futility of trying to exercise control over childbearing only after undergoing risky IVF procedures. Why did a 45-year-old mother of several children feel so compelled to have another baby, when doing so would almost certainly require significant technological help? Why did the lesbian couple wait 15 years, until they too were beyond their prime childbearing years, before decided to have children? All of these women would likely offer compelling and sympathetic reasons for why they made the choices they did. But did they think about how the choice to pursue technological reproduction at an advanced maternal age might force them to make other, harder choices? Did the medical culture to which they turned for help suggest that they consider the potential consequences of their choices, before helping them to exercise those choices?

I am heartened that some doctors are refusing to do twin-to-singleton reductions unless there are clear health reasons. But as long as we're relying on individual physicians, and individual parents, to set their own limits, we'll continue to have a reproductive medicine system in which the technology outpaces the cultural, moral, and medical discourse that is so needed. As a culture, as clinicians, and as families, we need to first recognize the morally troubling and potentially culture-changing choices made possible by reproductive technology, and then provide space, time, resources, and encouragement for dialogue around parental control, human limitations, and clinical responsibilities. Right now, the culture operates under a "shoot first, ask questions later" model, in which fertility patients are encouraged and enabled to exercise all of the choices available to them, without giving much thought to the cascade of additional choices that may, and often do, follow—choices concerning selective reduction, leftover embryos, how many unsuccessful IVF cycles are enough, whether to genetically screen embryos and for what traits, or how to respond to a troubling prenatal diagnosis.

In other words, we need to encourage and provide resources for dialogue around parental control and human limitations before an exhausted woman ends up in her doctor's office, asking her to reduce two babies down to one.

What Does It Mean to Be Called to Motherhood?

2011-08-10T10:19:00.000-04:00

While I've never heard God's voice audibly, or received the sort of bonked-over-the-head, unmistakable message that some believers do, I nevertheless firmly believe that God has called me to two major works: motherhood and writing. In my upcoming book, I describe how I first came to suspect that God was calling me to motherhood, which was both my heart's desire and the hardest thing I could imagine doing, given the 50 percent chance that my children would inherit my painful, disabling bone disorder.

In a broad sense, I also perceive parenthood as something for Christians to approach as vocation, rather than either a Biblical mandate (because Christian theology posits the worth of celibacy and singleness as well as marriage and parenthood) or a purely personal choice (because of how becoming a parent necessarily affects one's other work and ministry, and vice versa, as well as how our parenting choices today have global implications).

But referring to motherhood (or parenthood in general) using language of call and vocation makes many Christians uncomfortable, and for good reasons. Women fear that the idea of a "call to motherhood" can be exploited by those church leaders and pastors who continue to believe that a woman's place is in the home, raising godly children and submitting to her godly husband. In other words, women fear that people will decide that the call to motherhood is a blanket, universal call for all women, and that women who don't have children for whatever reason will be excluded and derided.

Melissa Florer-Bixler posted a response to my article last week on "Why don't you just adopt?" She was uncomfortable with the idea that adoption is something parents only do if they are called. Doesn't that set up adoption as this incredibly hard thing, something you only do if you are clearly called to it? And what about parents of biological children who never went through a process of discernment to determine if God was calling them to parenthood, and instead just got "knocked up"? Melissa suggests, after taking to a friend who has adopted children, that deciding to adopt is more about a conversion, a change of heart, than a call:

You don’t sit around and pray for a call to parenthood. You start opening up your life to the possibility of this radical vulnerability of your time, finances, love, and emotions. You pray for conversion to welcome any kind of life because we have absolutely no idea what we are getting ourselves into. You work to make a life of welcome.

I think that's a very helpful way to look at adoption, and parenthood, and the choices we make about whether and how to build a family. Mothering my children has forced me to "make a life of welcome" in ways I could never have anticipated. And as I wrote in last week's post on adoption, if my husband and I had not been able to conceive easily, it's likely we would eventually have chosen to adopt. I imagine that we would have undergone a process of conversion.

So I understand the discomfort with seeing parenthood as a calling, rather than something we do (or don't do) for all kind of reasons.

Yet I'm still certain that God called me to motherhood. I'm still moved by other parents' accounts of how God made clear what direction they were headed in their family life, such as Jennifer Grant's certainty in her new memoir Love You More that God led her to adopt her fourth child from Guatemala. And I still think it's helpful for Christians to look at parenthood not as a Biblical mandate, not as a personal choice, but as something we consider in light of the places, people, and works to which God is calling us, individually and as a body. We may come to parenthood easily, after years of struggle, or never; accidentally or with driven purpose. But given how fundamental the parent-child relationship is to human identity and health, given God's call to care for "the least of these," given ubiquitous and increasingly sophisticated reproductive technology, and given how our daily choices have increasingly global implications, we can no longer, in the words of theologian Bonnie J. Miller-McLemore, approach parenthood "blithely and unreflectively. People must now weigh carefully the validity and merits of their often preconscious and sometimes rather self-centered motives to reproduce themselves."

Part of such a weighing is considering how conceiving or adopting children fits into the various calls that God has placed on one's life. For some, like me, becoming a parent may indeed be a firm and clear call, which certainly doesn't make it straightforward or easy. We are all, parents or not, called to that life of welcome and a conversion of heart. Being a mom has been one of the more obvious ways that God has led to to a fuller life of hospitality and faith.

Sex Selection Not Only an Overseas Problem

2011-08-06T11:45:00.001-04:00

The recent publication of Mara Hivistendahl's book Unnatural Selection: Choosing Boys Over Girls, and the Consequences of a World Full of Men has sparked numerous articles and blog posts about a shortage of girls in countries such as China and India.

But parents request sex selection services (via sperm sorting, preimplantation genetic diagnosis, and termination after an ultrasound reveals the baby is not of the desired gender) in America too, leading to many ethical concerns. A Slate article lays out these concerns, some of which mirror the dynamics of sex selection in patriarchal cultures, and others that are tied to America's consumer culture.

Immigrants from China, India, and other patriarchal cultures request sex selection or pregnancy termination of female fetuses because they are under family pressure to produce sons. Other American patients want a daughter, for so-called "family balancing," or in some cases, to fulfill a mother's vision of what raising a daughter looks like. The Slate article includes a doctor's recollection of a patient who wanted a girl "for the pink and for the malls," leading the physician to wonder how the mother would react if her daughter turned out to be a tomboy.

As with most aspects of U.S. fertility medicine, clinicians have few guidelines and resources to help them respond to sex selection requests that make them uncomfortable for ethical reasons. The few studies that have looked at sex selection in the U.S. have conclude that

since white American patients opt for daughters, sex selection in this country won't contribute to the worldwide shortage of women. But a large-scale demographic shift isn't the only outcome that should rouse our concern. After all, more than 30 countries, including Canada and the United Kingdom, have already banned sex selection on the grounds that it reinforces gender inequality and sets a precedent for legitimizing eventual selection of traits ranging from eye color to intelligence.

To me, this is another example of the potential harms resulting when parental choice always trumps cultural, medical, and ethical consequences. I support reproductive freedom and choice, but not without some limits. If Canadians and Britons, who are certainly not living under governments that meddle dangerously in citizens' private lives, are willing to concede that sex selection undermines gender equality and tempts parents to treat their children as products, then we can too.

"Why Don't You Just Adopt?" (Once Again, with Feeling!)

2011-08-03T15:09:00.001-04:00

Today on Amy Julia Becker's blog, I have an adapted excerpt from my upcoming book challenging the common question posed to people dealing with infertility or family history of genetic disease: "Why don't you just adopt?" I've written about this before, so some of this will be familiar to long-time readers, but there's some fresh stuff in there too.

"Love You More": A Memoir of Adoption

2011-08-02T09:31:00.001-04:00

I occasionally cover adoption here at Choices That Matter, because of the ways that adoption naturally intersects with issues around infertility and families whose children have a significant chance of inheriting a genetic disorder. Adoption also raises questions around the vocation to parenthood and our responsibilities to the world’s children, whether they are in our families, our neighborhoods, or across the globe.

One of my colleagues at the Her.meneutics blog, Jennifer Grant, just published a fantastic memoir, Love You More: The Divine Surprise of Adopting My Daughter. I loved so many things about this book. Jen and I, though we have yet to meet in person, have noted how much we have in common: We are both Episcopalians with one foot in the evangelical world, theologically conservative but leaning left on many social and political issues. Her memoir had me nodding in recognition at other commonalities, particularly around parenting style.

Love You More is infused with humility and humor, as Jen describes her evolution as a parent. When she had one easy-to-manage, responsible child who did as he was told and gladly ate pears and brie for dessert (that is, before he discovered Oreos at age 3), she wondered why other parents didn’t just explain to their kids why they couldn’t have sugary cereal or why they shouldn’t play near the street. After all, logical explanation worked for her son. By the time Jen welcomes her fourth child, Mia, by adoption from Guatemala, she has learned that even the most conscientious parent will have disobedient children, become impatient or angry, and give their children Oreos for dessert.

I’ve explored the ethics of international adoption previously, such as here and here. When so many women relinquish their children because they aren’t able to care for them with meager resources, is adoption the best solution? Might we do more good by supporting policies that foster international development and good governance, so that women can raise their babies in peace and plenty? Is there potential for exploitation when relatively wealthy Americans adopt babies from impoverished communities and families?

Jen does a beautiful job of addressing these questions. While she recognizes these as legitimate concerns, and supports those working toward both international development and ethical adoptions, she also believes that God uses adoption to ensure that children get the love and resources they need to thrive. She sees adoption as a way for adoptive families and their communities to forge vital connections with the communities from which their children come. Jen’s bottom line: As with most human endeavors, adoption has the potential for ethical pitfalls, abuses, and imperfections. But for many families and children, like Mia, adoption is a gift from a God who cares so much about “the least of these.”

I was most moved by Jen’s certainty that Mia was meant to be her daughter, and that God led her family not just to adoption in general, but to adopt this particular little girl born in Guatemala. I am a skeptic about the idea that God orchestrates the pairing of children and parents this precisely. After all, don’t we all know of families in which children are damaged irreparably because they got stuck with terrible, abusive parents? But Jen is convincing. I believed her when she said she got a clear message from God telling her to adopt. I was intrigued by the fact that Jen became enthralled by her daughter’s photo on the adoption agency web site just days after Mia became available for adoption.

My friend and colleague Amy Julia Becker recently interviewed Jen about Love You More and her adoption journey. I invite you to read more about this lovely, engaging, and thought-provoking story, and the family at its center—and then go buy a copy for yourself. (Or better yet, win a copy by reading and commenting on Jen's blog post on Amy Julia's Thin Places blog. Yes, we all write for each other's blogs and review each other's books...this community is the best thing that has happened to me since I became a writer! Well, besides the book contract.)

Posts on Contraception and Humility

2011-07-23T16:05:00.000-04:00

Last week, I wrote for Her.meneutics (the women's blog on Christianity Today's web site) about natural family planning, contraception, and different ways that Christians approach family planning. I included some reasons that I use medical contraception instead of natural family planning (NFP), which involves monitoring a woman's ovulation carefully and is the method recommended by the Roman Catholic church for couples who want to space children's births or limit family size. Most of those who commented on my article, including some who practice and support NFP as a better choice for Christians, thanked me for the post and were gracious in their response. But as I expected, a few evaluated my contraceptive decisions more harshly, equating my desire to not have any more babies with selfishness, and implying that such decisions reflect a weak-willed, un-Christian aversion to anything that might make my life harder.

When a friend tweeted that a Catholic blogger had linked to my post, I was reluctant to click through to read the link. I've learned the hard way that, while one can argue that "there is no such thing as bad publicity" in the blogosphere, sometimes other bloggers link to my pieces in order to tell their audiences how misguided and wrong I am. My earlier Her.meneutics piece on why I let my son wear pink and paint his nails, for example, took some hits from defenders of so-called "Biblical womanhood and manhood."

So I was thrilled to find that National Catholic Reporter blogger Heidi Schlumpf had linked to my piece because she agreed with much of it. I was particularly gratified that she picked up on the post's core message, which was not really about debating NFP vs. medical contraception. Ultimately, I was encouraging Christians, particularly when discussing such intimate decisions as when, whether, and how we have babies, to honor humility over dogma, conversation over conviction, the realities of people's lived experiences over a one-size-fits-all mandate.

In a related conversation, Rachel Held Evans—recovering from a week in which she called out a well-known pastor for his bullying remarks, and received both high praise and harsh criticism for doing so—raised the question of how we bloggers can develop thick skin, but not too thick. There is much tension in learning how to be a person of conviction, without becoming impervious to criticism and questions; how to be impassioned and brave, but also humble; how to foster an environment of acceptance, where questions, uncertainty, doubt, and diverse opinions are welcomed, without capitulating to a cultural temptation to back off from saying anything worthwhile because we don't want to offend someone. It is of great comfort to know that other religion writers struggle with this tension.

A Dad Asks the Hard Questions About PGD

2011-07-21T05:55:00.000-04:00

A fellow blogger forwarded me a link today to a blog post written by a father whose daughter has Usher syndrome—a genetic disorder that is a leading cause of hearing and vision loss. The post is long, but this father does a great job of vividly describing the potential perils of widespread use of PGD to eliminate genes not only for disabling disorders, but also traits such as short stature. It's worth a read.

You Know What They Say: So Many Books, So Little Time

2011-07-20T13:04:00.001-04:00

It's a rich and exciting time for new books touching on reproductive ethics and parenthood. My nightstand is buckling under the weight of all that I plan to read, including a number of books I plan to review here. In the meantime, two new books of note:

My Her.meneutics colleague Jennifer Grant's new memoir, Love You More: The Divine Surprise of Adopting My Daughter, will be out July 22—earlier than expected! (Who knew that such things happened in the publishing world? Not me.) I just dug into this book last night and, knowing Jen's work, expect it to be full of insight and thought-provoking observations about adoption and related topics, including infertility and parenting culture. Love You More is available for pre-order now.

One of my favorite novelists, Jennifer Weiner, has a new book exploring surrogacy and egg donation. Weiner was inspired to explore the motivations and decisions around these topics by a New York Times magazine profile several years ago by Alex Kuczynski. Kucynski had a son via gestational surrogate, and her account of the experience, along with some poorly executed photos, left readers less-than-sympathetic to Kucynski's story. (I wrote about this controversy here.)

In an interview with Motherlode blogger Lisa Belkin, Weiner said a couple of interesting things about reproductive technology in reference to her new novel. For example,

Right now women are using surrogates because they can’t be pregnant. What worries me is the possibility that soon they’ll use surrogates because they don’t want to be pregnant. They don’t want stretch marks. They want to wear a bikini to the beach and drink all summer. They don’t want to interrupt their career. Whatever the reason, it could become one more piece of distasteful physical labor that you can outsource to someone who is less privileged than you.

And:

Whenever people with money have power over people with less money, you have the potential for exploitation. Jules [a character in her novel] went into egg donation as informed as a 21-year-old can be. You make a lot of choices at 21 thinking you won’t have regrets, and then learn later on that it’s not as simple as you’d thought.

I can't wait to read this book, titled Then Came You. In fact, I'll probably go buy it today. Join me in reading these provocative new books and we'll discuss them here on the blog.

In Israel, Reproductive Technology is No Big Deal, Not to Mention Free

2011-07-19T07:51:00.000-04:00

A New York Times article describes the booming Israeli assisted reproduction business, which is available to any woman, free of charge, until the age of 45. About 4 percent of babies born in Israel are conceived via IVF, compared with about 1 percent here in the United States.

Government support of assisted reproduction is rooted in Israel’s identity as a Jewish state, although anyone may partake of fertility clinic services, including Arabs and secular Jews. Besides embracing the Biblical mandate to be fruitful (having children is one of the 613 mitzvot, or life rules, that govern traditional Jewish life), Israelis are also concerned with replenishing Jewish populations post-Holocaust, and shoring up population numbers to ensure a strong Jewish presence on the world stage.

A mother who recently gave birth to a son after eight IVF treatments said this about the Israeli policy:

“There is something deeply humane about this policy, this idea that people have the right to be parents,” she said. “It’s something that characterizes life here: the value placed on life.”

Do people have a right to be parents? It’s a complicated question. On the one hand, it is a profound injustice for governments or religious institutions to infringe on the rights of people to bear children. Eugenics-based policies, for example, that force sterilization people from certain groups (the disabled, the mentally ill, people from particular ethnic backgrounds) are clearly immoral. On the other hand, an unfettered pursuit of parenthood by any means necessary can have significant costs—financial, emotional, ethical.

I approach parenting decisions through a Christian lens that sees parenthood as a vocation, or at least as something that Christians evaluate in light of the gifts God gave them and what God is calling them to do and be. While having children is a fundamental and wonderful gift from God, that doesn’t mean that we have the right to pursue children at all costs. As Anglican cleric Anna Poulson has written,

Regarding having children as a vocation is rather different than regarding them as a choice, yet Christians often confuse the two. . . . Vocation is a gift to us from God, whereas choice is generated by my own volition. Furthermore, vocations given by God are always faithful to and limited by his own designs; some options just aren’t on the menu.

Understanding parenthood as a vocation rather than a choice means that Christians may not exercise their “right” to bear children at all costs. This constraint becomes more meaningful, and perhaps more burdensome, in our technologically advanced culture, which offers myriad ways for people to overcome limitations on natural conception.

I have only the most superficial understanding of Jewish views on procreation. I wonder if this emphasis on vocation is a significant difference between Jewish and Christian views?

The second part of the young mother’s quote above—“It’s something that characterizes life here: the value placed on life”—echoes a sentiment that I’ve seen coming from pro-life commenters to online articles on reproductive ethics. While many pro-life Christians are opposed to reproductive technologies that manipulate embryos (such as IVF and PGD), some pro-lifers embrace anything, including reproductive technology, that enables the gift of new life.

I think that both positions—the blanket dismissal of all reproductive technology because of concerns about human embryos, and the blanket acceptance of all reproductive technology because they are literally “pro-life”—are overly simplistic. (I also think that blanket acceptance of all reproductive technology by pro-choice advocates, because they see unlimited reproductive choice as a fundamental right, is overly simplistic.)

But the Israeli approach to assisted reproduction is also refreshingly straightforward, free of so much of the angst, controversy, and financial hardships that characterize American fertility medicine. While I think the Israeli approach ignores some important moral and theological concerns, it certainly appears to make the process of pursuing assisted reproduction much easier and less fraught for those who desire children.

What do you think? Is there anything we can learn from the Israeli approach?

Beating on the Chest of God: Christian Responses to Infertility and Suffering

2011-07-14T06:00:00.001-04:00

by Mary Caler

I’m thrilled to share this guest post from Mary Caler, whom I’ve gotten to know via e-mail and blog comments over the past year. Mary lives in Nashville with her husband, Joshua. She is in the last year of writing her doctoral dissertation in sociology through the University of Virginia. Her dissertation examines the experience of evangelical Christians who have used in vitro fertilization, focusing on the ways that their religious commitments have guided them through that process. If you’d like to respond to Mary’s thoughtful post, please leave a comment here on the blog, or you can contact her directly at marycaler [at] gmail [dot] com.

Last week, I bought a sympathy card for a friend whose father unexpectedly died at the young age of 53. Being 500 miles away, sending a card and holding my friend in my prayers was all I could really do, though sending a card saying “I’m sorry,” seemed wholly inadequate to the pain he must feel. Because I live in Nashville, in the “buckle of the Bible Belt” where the Southern Baptist Convention takes up five blocks of downtown, nearly every sympathy card at the drug store contained some sort of religious message. Appalled by the pithy poems and simple clichéd prayers for peace and comfort, I finally found a card that simply said, “May God give you courage to bear the sorrow that you feel.” In my mind, there is no more appropriate prayer for those who suffer.

I’ve spent a lot of time lately reflecting on suffering. Roughly four years ago, I began asking sociological questions about infertility: How do people experience it? How do they make decisions regarding treatment? What role does religious faith play in helping people choose treatment options? Ironically, roughly four years ago, my husband and I made a decision to start our own family. We are still waiting. As my academic questioning mapped onto my own life, I began a spiritual journey of suffering.

As I do my research, listening to the stories of Christian men and women who struggle to conceive, I hear a variation on the same theme: No one ever knew what to say or do in response to our infertility. We have been lonely in our suffering.

I am a sociologist. I am not a theologian and, thanks be to God, I have not been called to be an ethicist. My primary questions about the experience of infertility are sociological. However, as a Christian, I am struck by so many stories of our failure to uphold one another in times of suffering. The constant refrain of the people I interview has been, “People are well-meaning, but they have said the stupidest things to us.”

Those “stupid” things have been catch phrases such as, “God is working for your good,” or “Consider it joy when you face trials,” or “Don’t be anxious; just trust that God is in control.” These phrases speak truths and treasures of the Christian faith; however, rolling them off the tongue in response to those who suffer deeply belittles both the pain they feel and the spiritual gift that suffering can be.

Suffering—our own and that of others—makes us profoundly uncomfortable. When I tell people about my infertility, it makes them much more uncomfortable than it makes me. I can see the panic on their faces, or hear it in their voices: “Oh no. What do I say now? How do I make this person feel better?” If the goal is to make me feel better (which is unlikely no matter what they say), they respond with, “Well, it’s in God’s timing,” or “Just keep having faith. God is working for your good.”

Such responses do not ease pain or suffering for anyone. In fact, many times they make it worse. To those who suffer, these words come across as a door closing, as a verbal shove: “Please do not let your suffering invade my picture of the good life. I don’t want to face this reality with you, so keep trusting God and take your pain away from here.” These responses deny us permission to suffer.

The only places I have experienced real freedom from my pain have been in the spaces where I felt free to embrace it. A good friend said to me once, “God’s chest is big enough to handle your fists pounding on it.” When I confessed to my spiritual director that I found myself unable to pray and ask God for a child, she responded that my silence before God is a prayer in itself; she encouraged me to feel deeply all that I was feeling and to offer those feelings up as prayers. If I couldn’t manage to say words to God, I could allow my heart to break, I could allow my anger to rise up, and I could inhabit the suffering before the God who knows all without my telling. And as my spiritual director sat in silence with me, month after month, I learned a lot about how to suffer, alone and in the presence of others.

Suffering can be a rich and wondrous place in which to encounter God. But in a culture like ours, one that has even permeated the church, we cannot suffer. In a culture that praises science, medicine, and healing (and according to the CDC prescribes more antidepressants than any other drug), we feel compelled to quickly find a remedy because suffering is too uncomfortable, for the sufferer and for those around her. We are accustomed to learning about God’s goodness through answered prayers and blessings that bring joy. We know God loves us when he lifts our burden and heals our pain. To suffer is to feel God’s absence.

But I’ve learned the most about God’s love in a place of suffering. Consider the place where God’s love for the world is brought into sharpest focus: at the cross of Christ, the place of ultimate suffering and brokenness. The shadow of the cross can be a powerful place to meet a God we usually seek under rainbows and blue skies. I’ve come to believe that when we suffer, we are closest to the heart of God.

If suffering can be a spiritual gift, what are we doing when we push each other out of it? By saying, “Try not to be angry,” or “Consider it joy,” we are denying each other the potential spiritual richness of suffering. We are also denying a whole beautiful tradition (for example, the Psalms) where we meet God in brokenness, pain, and sometimes even anger.

We are trapped in a culture that is averse to suffering, and as a result we might be missing an important place of encountering God. Because we have forgotten how to suffer, and because we seldom give each other the space in which to do it, we often perceive science and technology as our saviors.

While I do see reproductive technology as a potential gift and grace to those of us who face infertility, it falls directly under this critique. I believe it should be used more cautiously than our culture tends to use it. I also believe that we need to be honest about the circumstances under which reproductive technology may be unethical, exploitative, and out of line for Christian use.

My core question is this: If those of us who face the anguish of infertility were given the cultural and theological space to inhabit our suffering, to beat upon the chest of God, if we were encouraged to embrace suffering as a spiritual gift, and if our brothers and sisters in Christ would weep and scream and sit in silent exhaustion with us, rather than admonish us to simple faith and easy joy, would that change the way we approach reproductive technologies? If we felt free to suffer, would we perhaps feel less compelled to resolve our infertility through technological means?

In many of the interviews I’ve conducted, I ask participants if they talked to their pastors, spiritual leaders, or teachers about their infertility before seeing a doctor. The answer has been a nearly universal “no.”

I acknowledge that my argument might come across as just another variant of “God is working for your good,” and I hope that’s not how it is read. Suffering is horrible. Weeping through the night is exhausting. It is not good. It is a feature of a broken world. God weeps with us. When we learn to weep, we learn a lot about God.

I am also not saying that no one should use reproductive technology. Medical responses to infertility can be gifts that bring healing and the children we long for. But we should use reproductive technology carefully. And we should be willing to reject it, when it conflicts with what God has called us to be and to do.

If we had the space to suffer fully, we could approach reproductive medicine more carefully and thoughtfully. So my prayer, for myself and my brothers and sisters who suffer from infertility, is, “May God give us courage to bear the sorrow that we feel.” May we bear our sorrow faithfully, may we find the Christian community that will bear it with us, and may we proceed with caution when and if we decide to use technologies to conceive longed-for children.

The Book!

2011-07-11T18:32:00.001-04:00

I received this initial publicity flyer for my upcoming book today. Very exciting! I'll have a cover design to show off within the next month or so, and will share ordering information here when it's available. I've got a great guest post coming up later this week, so come on back to check it out!

Where, Oh Where, Has the Blogger Gone?

2011-07-04T15:28:00.001-04:00

Here I am, finally. It has been awfully quiet here on Choices That Matter...my apologies, especially to those intrepid readers who subscribe to my blog feed and regularly make helpful comments. Summer took me by surprise; my preschooler was sick for his last two days of school, so my kid-free days for writing came to an abrupt and unexpectedly early end. We were caught up in the whirlwind of end-of-school-year stuff at my daughters' school, then housesat for some friends at their waterfront beach house (somebody had to do it...), made a trip to the ER, and packed the girls up for camp. While the summer schedule will not allow me to post as regularly as during the school year, I am back, and I have a plan.

I will post a minimum of once weekly from now through the first week of September, at which point I resume a more regular schedule of blogging two or three times per week. This summer, I will focus on book reviews, starting with The Boy in the Moon by Ian Brown. This particular book is so full of good stuff, and inspired so many varied lines of thought for me, that I will likely write several blog posts on it. I've got a huge pile of other books to review as well. Also on the agenda for this summer is taking the first steps to create a new author web site, which this blog will eventually be a part of.

I'm pleased to report that my own book is in the hands of the wonderful staff and editors at Westminster John Knox Press, and publication is planned for January 2012. My editor and I are lining up endorsements and discussing subtitles and cover designs with the powers that be. This is definitely the fun part!

So, I'll be back next week with my first post on The Boy in the Moon. In the meantime, there has been a lot of press lately about how sex selection, made easier by various reproductive technologies, is leading to serious gender imbalances in countries such as India and China. Amy Julia Becker wrote on this topic for Her.meneutics, and Mara Hvistendahl writes about the potentially cataclysmic effects of gender imbalance on social, cultural, and political dynamics in her new book Unnatural Selection. A couple of months ago, I and a regular reader had an interesting conversation about sex selection in the comments section of this post. We were pondering the relationship between sex selection as it often occurs in the U.S. (as an add-on procedure for someone who is already undergoing IVF for other reasons, for example, or for "family balancing") and sex selection as it often occurs elsewhere (where determining a child's gender via PGD or prenatal testing is often a goal in an of itself, and where oppressive and patriarchal values threaten the life, health, and well-being of girls and women). Are there different steps on the continuum of sex-selection procedures, and are some steps relatively benign? Or is any attempt to select a child's gender ultimately an egregious assertion of flawed, unjust preferences? Both Becker and Hvistendahl argue that, whatever your opinion on the ethics of sex selection, the significant gender imbalances that result will have major consequences for human culture and well-being in years to come.

Egg Freezing for Fertility Preservation...

2011-06-01T10:32:00.001-04:00

...and Why I'm Having Trouble Stringing Two Words Together, Much Less Writing a Decent Blog Post

If you're wondering why I've posted so seldom recently, I'll let Motherlode's Lisa Belkin explain it for me. The last six weeks of the school year are absolutely crazy...and I'm a mom who deliberately limits the number of extracurricular activities my kids are involved in. Nevertheless, we're out somewhere almost every night. Nearly every day, I'm sending one or more kids to school with a special project, or special clothing for some event, or a notice to put in their classmates' mailboxes about teacher gifts and the school fair and such. It is exhausting.

I could probably connect all of this frantic activity to the topic of reproductive technology. After all, no one forced me to sign my kids up for tee-ball and piano lessons and thus subject my family to the scheduling gymnastics required by piano recitals and dinnertime ball games. I don't remember May and June being quite so frenetic when I was young, perhaps because kids didn't start playing organized sports in preschool, and parents didn't feel so pressured to present every single one of their children's teachers and coaches with a substantial, thoughtful, and personalized gift. Is the end-of-year madness tied to the modern ethic of parental control and responsibility? Probably. But I'm too tired and wired to say much more than that about it, so I leave that for you to ponder.

In other news, NPR did a story on the increasingly viable and attractive option of encouraging younger women to freeze their eggs in case their career or relationship plans don't allow for childbearing before age 40. Women and clinicians present this technique as a form of empowerment, allowing women to take control of their reproduction to the same revolutionary extent that the birth control pill did several decades ago. I can see the appeal of allowing one's life to unfold without the added pressure of wondering if you'll meet your partner young enough to allow for natural conception, or without having to question whether to accept a new job or promotion because your biological clock is ticking and you're not sure the new gig is compatible with raising children.

But as usual, I think the problem here is that the technology is being offered and normalized—portrayed as the natural next step in reproductive choice made possible by medical technology—without any guidelines in place governing and, yes, limiting its use. The article mentions that many clinics suggest allowing women to use their frozen eggs up until around age 50. But inevitably, some women will want to use their frozen eggs well into menopause—and many clinics don't have firm guidelines. And as long as couples are using IVF to get pregnant, they will also have the option of doing various kinds of screenings on the resulting embryos. Yet we (the public, fertility patients, ethicists, advocates, clinicians) haven't yet engaged in the necessary conversations about what traits we will and will not allow couples to screen for. Once again, a new technology is taking off without much-needed discussion of ethical concerns and limits.

This technology may indeed be empowering for women. But we can't afford to evaluate any emerging reproductive technology solely on the basis of how it affects reproductive choice. Choice is one concern. Embryonic life is one concern. In a culture so familiar with pro-choice and pro-life rhetoric, too often we fail to look beyond those concerns. But they are not the only ones.

Myths and Analogies: Relying on “Reasonable” People to Ensure Ethical Use of Reproductive Technology is Unreasonable

2011-05-18T11:50:00.000-04:00

For obvious reasons, I devour other parents’ memoirs about difficult reproductive decisions. One of my favorites was last year’s Saving Henry: A Mother’s Journey by Laurie Strongin, about the author’s ultimately unsuccessful attempts to conceive a baby via PGD who would be a good donor match for her critically ill oldest son, Henry. Henry had a life-threatening genetic blood disorder that could only be successfully treated by a bone marrow transplant, and died at seven years old. Strongin and her husband have become advocates for the responsible use of PGD to treat and prevent devastating genetic disorders.

I loved this book, as I explained here, because Strongin convinced me that their decision to try conceiving a so-called “savior sibling” for Henry was made out of love and a deep gratitude for all of their children’s lives, not utility. I do, however, disagree strongly with one thing Strongin says several times in the book. When people raise concerns that PGD opens up the possibility of “designer babies”—of using PGD to manipulate our children’s appearance, intelligence, athletic skills, etc.—Strongin replies that these are “things no reasonable parent would do.” While I would like to share her optimism, I don’t.

Myth: Reasonable people understand that IVF, PGD, and other technologies are tools for loving, committed parents to have healthy children. Fears around eugenics, designer babies, and other unjust or exploitative practices are unfounded because people clearly recognize these practices as ethically troubling.

Response: I don’t buy the “reasonable people will prevent morally suspect use of reproductive technology” argument for two reasons.

First, civil societies recognize that, even if a majority of people are reasonable folk capable of behaving themselves and recognizing legitimate and illegitimate behaviors, we still need rules and consequences to account for the inevitable presence of a few unreasonable folk. Most of us accept that murder is wrong and can’t imagine ourselves ever doing it. We see murder as an unreasonable act that does more harm than good. But we don’t sit back and say, “Most people will never murder someone and understand that murder is wrong, so we don’t need to fret about ways to prevent murders or punish murderers.” We have laws that govern when murder is and is not reasonable. We say that it is reasonable, for example, to murder someone else if that person posed a direct, immediate threat to your own life, or it is reasonable for a police officer to murder someone if a suspect poses an immediate, direct threat to others. But it is not reasonable to murder someone because they are having an affair with your husband, convinced you to make a lousy business investment that ruined you financially, or stole your stash of coke. We impose punishments on those who murder for reasons that the law does not recognize as reasonable and justified.

Likewise, the fact that most people don’t use reproductive technology for clearly troubling reasons (because they want a blond-haired, blue-eyed baby, or don’t want to ruin their figure by getting pregnant, or want to have a baby to give an organ to one of their other children) doesn’t mean that a few people won’t. We need to discuss and decide where to draw some lines between acceptable and unacceptable uses of reproductive technology, including banning certain practices and imposing clear consequences for patients and clinicians who cross established boundaries.

Where should those lines be drawn? That’s a trickier question. But it would be a big step forward if we could agree that the potential for unreasonable people to do egregious things via technological reproduction exists and requires our intervention (in the form of preventive guidelines and punitive consequences), even if potential abuses are few compared with all the times the technology is used in ways that many people perceive as legitimate (to treat established infertility or help a family avoid devastating genetic disorders, for example).

Second, cultural norms change, including what is perceived as reasonable and unreasonable for parents to do in order to raise healthy, happy, successful children. Today’s parents regularly engage in practices that previous generations of parents would (and do) find unreasonable. Fifty years ago, people would have thought it completely ridiculous that parents would send their preschool-age children to kindergarten prep classes, refuse to let their kids walk a few blocks to school by themselves for safety reasons, fear police intervention if they leave their kids in the car while they grab some milk at the grocery store, refuse to vaccinate children against deadly diseases based on fears that have been repeatedly disproven by medical research, complain about a teacher who occasionally offers candy as a classroom reward, or spend thousands of dollars a year for their children to participate in elite sports teams, skills-oriented summer camps, SAT tutoring, and music lessons. But today, those “unreasonable” parenting norms are, well, the norm. They are perceived as so commonplace, so necessary, that even parents who recognize how crazy it all is find ourselves questioning whether we’re failing our kids by refusing to participate in the craziness.

So, if over time, parenting norms dictate that good parents genetically screen their babies to ensure that they inherit genes correlated with beauty, brains, and success and don’t inherit genes associated with particular medical ills, undesirable physical traits, etc., might it be perceived as perfectly reasonable for parents to create designer babies? What if institutions further embed such norms by, say, deciding that a lack of appropriately thorough pre-birth screening counts as a “pre-existing condition” for medical insurance purposes, or that parents who conceived babies naturally are not entitled to any special educational services for their kids?

I wish I could discount such fears as completely unreasonable. But I can’t.

A Catholic Parent Challenges His Church's Stance on IVF

2011-05-13T17:23:00.001-04:00

In an article appearing on CNN’s web site this week, lifelong Roman Catholic Sean Savage urges his church to reconsider its position against in vitro fertilization (IVF). Savage and his wife “were victims of the worst IVF mistake on record,” when doctors transferred another couple’s embryo into Carolyn’s uterus. As Savage explains, on the day Carolyn gave birth to a baby boy and immediately relinquished him to his genetic parents, the “Catholic Diocese of Toledo released a statement to The Toledo Blade condemning IVF as ‘morally unacceptable.’ Because we were the focus of the news, we felt as though the diocese was really condemning us. The statement hurt Carolyn and me tremendously. We had hoped for the church's support and prayer on one of the hardest days we've ever faced.”

One of Savage’s main points is that, rather than focusing solely on making moral judgments, the Church could provide guidance to help couples accessing reproductive technology to make sound ethical decisions. Savage argues that, “The church's presence in this field could help limit abuses and disregard for human life through advocacy, education, and support. Perhaps it could provide counselors as couples pursue IVF and face many technical and nuanced decisions. And maybe the church could help couples navigate even more complex situations, like embryo adoption.”

This echoes one of the main conclusions I’ve reached as I’ve researched and written about Christian perspectives on assisted reproduction: Prospective parents need access to better quality and more accessible resources for guidance and moral deliberation. Church is an obvious place for faithful parents to turn for help, but absolute pronouncements condemning all technology (along with other obstacles to useful counsel, including clergy who are unfamiliar with current technology and/or tend to fall back on not-always relevant pro-choice/pro-life terminology) are significant barriers.

Language is another barrier that keeps the Catholic Church (and other churches) from engaging this topic in ways that would be perceived as supportive and helpful, rather than out of touch and judgmental. Roman Catholic documents alienate parents by using harsh and loaded words to describe the moral problems inherent in reproductive technology.

Savage, for example, mentions the word “illicit,” which several major Catholic documents use to describe IVF and related technologies. Use of such a loaded, negative word virtually ensures that readers who have used or considered IVF will feel defensive and accused of something shockingly corrupt. “Illicit” is an appropriate label for the latest sex scandal involving a politician and his expensive escort, not for a loving couple seeking relief from the pain of being unable to bear children.

Similarly, the U.S. Catholic Bishops’ 2009 statement opposing assisted reproduction, Life-Giving Love in the Age of Technology, has this to say about couples who use third-party techniques, such as donor gametes and surrogacy: “In an important sense, the spouses [who rely on gamete donors or surrogates] have decided not to be fully the mother and father of their child, because they have delegated part of their role to others.” I recently had a friend over with her 10-month-old daughter, who was conceived via IVF using a donor egg. As her daughter keenly followed her mother’s every move and protested the minute she left her sight, my friend said, “I challenge anybody to tell me I am not this child’s mother.” The bishops’ language is off-putting, even offensive, to parents who know from emotionally rich and valid experience that using donor gametes is not a decision to “delegate” the role of mother and father to others.

Several parents I’ve talked to likewise object to the Catholic argument that use of donor gametes and surrogacy “violates” their marriage by bringing third parties into a process designed by God to only involve two people. “Violate” is another harsh and loaded word, associated with deplorable and illegal acts; criminals violate the law, rapists violate women. It also fails to speak to the actual experience of couples who have children using donor sperm, donor eggs, or surrogates, many of whom find that their marriage is stronger at the end of their reproductive journey than it was at the beginning. Involving third parties in reproduction raises valid ethical concerns, including the question of whether it interferes with God’s plan for marriage as being a union between one man and one woman, from which children may arise. But the word “violate” puzzles parents for whom such a word is far too grim to describe their experience of going through assisted reproduction with their spouse.

Churches owe it to the faithful to engage in compassionate dialogue that takes parents’ stories and suffering seriously, and uses respectful, thoughtful language. Parents, however, also need to be willing to look closely at their motives and assumptions. One question I’m left with after reading Savage’s piece is why he and his wife felt it was so necessary to have additional children. As far as I can tell from the essay, they had two boys before undergoing IVF to have an additional child, have one daughter born via IVF, and are expecting IVF-conceived twins later this year. Savage argues that having his daughter and their expected twins would have been impossible without technological help because of his wife’s endometriosis. True enough. But he doesn’t address why having those children was so vital.

Parental desire for children is a powerful, innate force—one with which I am completely sympathetic, having been motivated by that desire from a very young age. I also think, however, that Christian parents have a duty to explore and evaluate that desire in terms of their vocations and cultural vs. faith values. Medical technology can be an instrument of God’s healing, and I will never accept the idea that God requires people to suffer for some higher purpose. But we live in a culture that puts a lot of faith in technological fixes, a culture that assumes that if something can be fixed, it always should be fixed. In our technology-oriented culture, we can lose sight of the benefits we gain—spiritual, emotional, psychological, even physical—from learning to live fully within and in spite of our limitations, including biological ones. I’d be interested in hearing more from Savage on this point. Why was treating his wife’s infertility via IVF their first and only choice? Why did they decide against either not having additional children or adopting? (Those are honest questions, not intended to judge them for the choices they did or did not make.)

In theory, churches are the ideal place for parents-to-be to grapple with difficult reproductive decisions in the company of supportive, compassionate people who share their faith and values. But stories like Sean and Carolyn Savage’s remind us that, in practice, they rarely live up to that ideal.

The Tension Between Accepting and Curing Disabilities: Revisiting an Award-Winning Exchange

2011-05-06T11:55:00.000-04:00

Exciting news today: I and my friend/colleague Amy Julia Becker won an award from the Evangelical Press Association for online articles we wrote for Christianity Today last winter (we received third place in the Article Series division). Amy Julia started the conversation in response to news that a new drug therapy showed some promise for improving cognitive ability in people with Down syndrome. As the mom of a daughter with Down syndrome, she questioned prevalent cultural and theological assumptions that see people with Down syndrome and other disabilities as fundamentally broken and in need of fixing, when in truth we are all—regardless of physical and cognitive ability—both broken and whole, limited and gifted. I responded to her column with my own, arguing that while I want to be fully accepted, crooked limbs and all, I also see my disability as an example of how the world is not as God intended it to be and desire healing, for myself, my daughter, and others who live with painful and limiting disabilities.

This column was a pivotal piece of my journey as a writer focusing on disability and faith. After they published my piece, Christianity Today editors invited me to become a regular contributor to Her.meneutics, their women's blog. It's also a great example of how vital it is to have thoughtful writing partners like Amy Julia, even if they are sometimes sparring partners. Here's to many more conversations with her and others!

A Donor's Lawsuit and the U.S. as Donor-Egg Central: Two News Stories Highlight the Need for Oversight and Conversation Around Reproductive Technology

2011-04-30T16:22:00.000-04:00

According to The Economist, an American egg donor is instituting an antitrust lawsuit against the American Society of Reproductive Medicine (ASRM) and its sister organization, the Society for Assisted Reproductive Technology (SART). The donor, Lindsay Kamakahi, argues that the ASRM/SART voluntary guidelines against excessive egg-donor compensation (generally, more than $5,000) are keeping donor payments artificially low. Her suit argues that the compensation guidelines were developed using sperm-donor fees as a starting point, and raising the amount paid to egg donors based solely on the additional time that female gamete donors must spend in a clinic, compared to male donors. Kamakahi argues that the fees paid to egg donors fail to compensate women for the significant additional medical treatment and risk that they undertake.

The lawsuit stands in stark contrast to the idea that egg-donor compensation in the U.S. is excessive, and that a system of voluntary donation, similar to that governing organ donation, would better ensure that young women are not being exploited and subjected to serious medical risks to serve a fertility clinic clientele that often pays a premium for eggs provided by women who meet certain criteria (Ivy League education, physical beauty, etc.). I was initially surprised when I read the article, but then realized that given the market orientation of U.S. fertility medicine, it really shouldn't be a surprise when someone applies business principles to reproductive technology. I'm interested to see where this goes. My initial impression is that the lawsuit is based on an erroneous assumption. According to the Economist article:

The ASRM and a sister organisation, the Society for Assisted Reproductive Technology (SART), are said in the lawsuit to represent 85% of the country’s clinics and egg-donor agencies, and are in a position to make them comply with their maximum-price rule. If they do not, they risk being thrown out of SART and losing its seal of approval, which might discourage potential customers from using them.

But it is generally acknowledged among experts in reproductive medicine that voluntary ASRM guidelines, on everything from donor compensation to the number of embryos to transfer in an IVF cycle, are regularly flouted by practitioners and patients focused on achieving pregnancies. A 2010 Hastings Center Report, for example, published results of a survey that showed that egg donors, particularly those from Ivy League colleges, are regularly offered fees that go far beyond the recommended $5,000 limit.

In another story touching on egg donation, BBC News did a report on so-called fertility "tourism," in which people seeking fertility treatment travel to other countries where a desired treatment is more accessible. The U.K., for example, restricts egg-donor compensation (donors can only be reimbursed for certain expenses) and allows adult children conceived via gamete donation access to their genetic parents' information. British fertility patients often travel to the U.S., where they have many more donated eggs to choose from because donors here are both compensated well and assured of anonymity.

Unlike many other (usually Catholic) European nations, which completely ban many reproductive technologies, Britain allows IVF, PGD, and related technologies, but only under certain circumstances and restrictions. In the U.S., in contrast, factors such as the market orientation of fertility medicine and a federal ban on embryo research have allowed reproductive medicine to develop with few restrictions. The positive aspect of this system is that those seeking fertility treatment have many more choices available to them—if they can pay. The negative aspects, however, are many. In a market-oriented system, treatment decisions are tangled up with economic realities. Often, the question for patients is not, "What should we do?" or "What do we want to do?" but rather, "What can we afford to do?" Guidelines for morally fraught decisions, such as what genetic information should and should not be tested for at the embryonic stage, are few and far between—a situation that leaves thoughtful patients on their own with difficult decisions, while reckless patients and clinicians can do what they wish under the banner of reproductive choice. For example, I came across another article this week about Indian women living in the U.S. who access fertility treatment in order to satisfy cultural and familial preferences for boy babies. As the article points out, nearly unlimited reproductive choice can actually end up constraining the choices of individual women who feel pressured to produce certain kinds of children.

Obviously, the British system is not perfect. When they can, British patients go elsewhere to access more and different fertility treatment options. But it is time for American clinicians, patients, and observers to recognize that a system based on unfettered choice and market dynamics will continue to raise new and difficult moral dilemmas unless we begin honestly talking about commonsense limits on how, when, and why patients can use reproductive technology. Babies are not consumer products, and procreation is not a manufacturing process rightly governed by antitrust laws and supply-and-demand market principles.

Movie Review of "Eggsploitation": Part Two

2011-04-26T05:00:00.003-04:00

This is the second in a two-part review of the film "Eggsploitation." Part one appeared yesterday. Today's review goes into more detail about the specific criticisms that my focus group had of the film.

Problems with Style: To put it simply, the movie’s tone was overdramatic. The title graphic features a bug-eyed young woman with a male hand clapped over her mouth. The music is haunting, the camera work jerky and shadowy. One guest commented within the first couple of minutes that the film had the tone of a “horror movie.” When I issued my Facebook invitation, which included a link to the film’s trailer, more than one friend commented that the trailer was a bit much. If the filmmakers were trying to alarm us with all the drama, they didn’t succeed. The overdramatic tone made us more skeptical than curious.

Several audience members also noted some problematic language. Young egg donors are referred to several times as “girls” instead of “women.” Sindy, the egg donor who had internal bleeding, is introduced as someone who was recruited to help conceive “designer offspring.” While many observers (including me) recognize the troubling potential for reproductive technology to be used in ways that turn children into products designed to parental specifications, whether the technology actually realizes that potential in every case is far from a settled question. Stating outright that an egg donor was recruited to produce a designer baby reveals a clear bias against the use of this technology. I wonder how the parents Sindy set out to help would feel about the assumption that they wanted a “designer” baby.

Problems with Substance: Style aside, however, Eggsploitation’s major flaw is that it makes troubling arguments unsupported by facts. It takes anecdotes—several women’s stories that are undeniably troubling—and uses those to make sweeping statements about the fertility industry and egg donation in general. It supports those statements with bad (or more often, no) scientific evidence.

Because we never hear from the clinicians involved in any of the featured cases, it’s hard to know the full story of what happened to Alexandra, Sindy, Calla, and the other women whose stories are shared. Is it possible that their clinics truly did not inform them of the potential health risks of egg donation? Certainly it’s possible. But of the seven women watching the film in my den, two of us have gone through IVF (as patients, not donors) at reputable clinics. We received full disclosure of the risks, which include a less than 2 percent chance of developing Ovarian Hyperstimulation Syndrome (OHSS) as well as all the usual risks associate with surgery, such as bleeding and infection. The risks are not just casually mentioned; nurses and doctors go over them extensively and you sign papers indicating that you understand. I’ve had many surgeries in my life, and in every case, someone at some point has reminded me that death is one of the possible outcomes, and asked me to sign a paper indicating that I understand I could die.

Perhaps these women received poor care in which the risks were either not mentioned or minimized, but we were skeptical that this lack of adequate care is the norm. We came away thinking, rather, that they all had some bad luck compounded by bad decisions on both their and their caregivers’ part. Alexandra, for example, who had the torsioned ovary, went back to the clinic three times rather than an emergency room, despite being so ill she could barely get out of bed. That questionable decision was made worse by her seeing an unfamiliar doctor at the clinic who didn’t recognize the seriousness of her condition. Calla’s stroke after starting fertility drugs was due to a benign tumor on her pituitary—a condition that neither she nor her doctors knew about, and that might have caused complications if at some point she underwent fertility treatment for herself, or even just became pregnant. The young woman with migraines who ultimately decided that she would not donate her eggs kept saying things like, “We were not in control.” We all wondered, “Really?” If at any point you can withdraw from donation (which she ultimately did), then aren’t you actually in control?

The film tries to establish a link between cancer and fertility treatment—a link that is thus far unsupported by the medical literature. Should this potential link be further studied? Yes. Is it possible that one day researchers will find a link? Of course. But the film implies an established link where there is none, thus using cancer as a scare tactic. Alexandra developed invasive breast cancer after undergoing egg donation. She is sure the cancer stems from the fertility drugs because she has no family history of breast cancer. But a majority of women with breast cancer don’t have a family history, and her sense that the two things are related is not proof that they are. The most egregious claim of the film takes place during a photo montage about a young woman who donated eggs three times and then, the narrator tells us ominously, died of colon cancer at age 34. There is absolutely no proof this young woman’s cancer—or any woman’s cancer—is tied to fertility drugs. Yet the filmmakers clearly want us to believe that this woman died because she was an egg donor.

Conclusions: As we discussed the film afterward, members of my group made the following observations about reproductive technology and egg donation in general:

Fertility medicine and egg donation should be better regulated.
Perhaps the recipient of a woman’s eggs should be required to purchase an insurance policy on her behalf to cover any medical complications.
The ASRM guidelines on fertility medicine, including limits on donor compensation, need to be mandatory, not voluntary.
There need to be limits on the number of times a woman can donate eggs as well as on compensation.
Additional research into the health risks of fertility drugs, including the cancer risk, is important.

In other words, we are sympathetic to the idea of greater oversight and more facts in the egg-donation business. But the movie itself was unconvincing. Some comments from the group:

“I’m hard pressed to believe that these cases are representative.”
“If I had seen this movie when I was in college, I would have focused on the fact that I could make $100,000 by donating my eggs.”
“This movie was not made for us. It was made to scare 22-year-olds. We’re old enough to know lots of people who have gone through these and other medical procedures and we have a different perspective.” (For example, several of us have had cancer and know that, much as you’d love to blame it on something, cancer often happens for no good reason.)
“The movie was a shallow, one-sided scare tactic.”
“I expected to be more disturbed by this, but I wasn’t, because it was just so overdone."[From my friend who had a baby via egg donation.]

Movie Review of "Eggsploitation": Part One

2011-04-25T15:42:00.010-04:00

Last Sunday, over Cosmos and egg-themed snacks (deviled eggs, egg rolls, quiche, jellybeans…you get the idea), I and several friends watched the film Eggsploitation in my den. The film, produced by the California-based Center for Bioethics and Culture, explores the risks that egg donors face and the potentially exploitative nature of the relationship between donors and fertility patients/clinics. This is the first part of a two-part blog post about my DIY focus group’s response to the film.

The Audience: I offered an open invitation to my local Facebook friends, six of whom ended up attending. All of us have at least one child. Politically and socially, the group ranges from moderate to very liberal. The group included one agnostic, one Catholic, two Episcopalians (including me), a Unitarian, a Congregationalist, and a Quaker. Professionally, the gathering included an artist, a doctor, a librarian, a nanny, a psychologist, and a college academic counselor. We are a pretty health-savvy group, with extensive professional and personal experience with various health issues, including surgery, natural childbirth, diabetes, mental illness, cancer, food allergies, and infertility.

All of my guests are familiar with my writing about the ethical concerns raised by reproductive technology, and several are faithful readers of pretty much everything I write. One guest conceived the second of her two children via IVF using a frozen donated egg, and frequently provides thoughtful comments on my blog. Everyone in the group acknowledges that reproductive technology raises ethical concerns, and recognizes the need for greater oversight and consideration of those concerns.

The Film: The film’s overarching message is that egg donation is an unregulated and unstudied procedure that puts donors’ health and future fertility at risk. It paints a picture of egg donors as a group exploited by clinicians and infertile couples who are solely focused on achieving pregnancies, without giving adequate consideration to the health risks that donors face. Experts interviewed in the film are concerned that little research data is available about the long-term risks of egg donation. Furthermore, they argue that it is unlikely that research will ever be done, because egg donors are nameless, faceless contributors of biological material in a system that has no interest in their long-term needs and safety.

The film also explains the basic steps involved in egg donation (ovarian stimulation and egg retrieval), and discusses financial compensation for egg donors, providing many camera shots of ads offering thousands of dollars to egg donors at elite colleges. While the film cites a few easily obtained statistics (such as CDC data on the number of egg donor IVF cycles) and interviews one expert (a former FDA medical officer) extensively, Eggsploitation largely centers on three women’s stories.

Alexandra became an egg donor to earn money while she was finishing her doctoral dissertation. Several days after her egg retrieval, she developed severe abdominal pain. In the coming days, she also had abdominal distension and severe vomiting. She returned to the fertility clinic three times before a doctor accurately diagnosed her with a torsioned (rotated) ovary. Ultimately, she was also diagnosed with an intestinal ileus (a twisted intestine), and had to have her ovary removed. Several years later, she developed breast cancer that required chemo, radiation, and a mastectomy.

Sindy, a joint MD/Ph.D. student, also became an egg donor because of the financial incentive. Immediately after her egg retrieval procedure, she had abdominal pain, nausea, and extremely low blood pressure. She was eventually hospitalized for several days because of internal bleeding as a result of an ovarian artery being nicked during retrieval.

Calla had a severe stroke that resulted in temporary paralysis of her left side shortly after starting injections of Lupron, a medication that spurs the body to begin maturing multiple eggs at once, rather than the single egg per menstrual cycle that is normal. She learned that the injections stimulated a benign tumor that she had on her pituitary gland, which led to her stroke.

These women claim that the risks of egg donation were inadequately discussed, and that even when they began experiencing health crises, fertility clinicians were intent on minimizing their symptoms and ensuring that the donor cycle continue. Three other women make briefer appearances in the film. One woman backed out of egg donation after learning that the hormone injections would likely exacerbate her migraines and possibly lead to seizures. She and her husband report that their concerns for her health were dismissed and that clinic personnel tried to convince her to continue with donation. Two other women appear in film montages—a three-time egg donor who died of colon cancer at age 34, and a fertility patient who died of ovarian hyperstimulation syndrome (OHSS), which is one of the known risks of ovarian stimulation for both egg donors and fertility patients.

Overall Assessment: I and my focus group agreed that the risks of egg donation need to be better studied and shared with potential donors. We also recognized how financial compensation and a lack of government oversight creates potentially exploitative or coercive relationships. However, we felt that these commonsense messages were compromised and obscured by serious problems with the film’s style and substance. So although we were sympathetic to some of the movie’s core arguments, we were puzzled and unconvinced by the methods used to make those arguments. In my next post, I’ll go into more detail about these criticisms.

FDA Limits Use of Sex-Selection Technology for "Family Balancing"

2011-04-13T11:53:00.000-04:00

The Virginia-based Genetics and IVF Institute (GIVF) recently announced that the FDA is no longer allowing them to use their MicroSort system to help prospective parents choose their baby's gender by separating sperm according to whether they carry an X or Y chromosome. This FDA limitation marks a change in the federal agency's oversight of the MicroSort program; they previously approved it as a clinical trial of sorts for both prevention of sex-linked genetic disorders and family balancing (which refers to parental desire to have a child of a specific gender because they already have several children of the other gender). GIVF (and other fertility clinics) still offer gender selection via preimplantation genetic diagnosis (PGD), in which fertilized eggs are genetically tested and only those of the desired gender are implanted in the mother's uterus.

Just last night, I read a brief article in Redbook magazine about a woman who used MicroSorting to ensure that she would have the daughter she had always longed for, after having two boys. The mom said, "As women, we're encouraged to go after our dreams, but I had this one huge lifelong dream that wasn't supposed to count." I'm fascinated by that justification for using sex selection for family balancing, with its hint of feminist empowerment.

Sex selection is not a feminist ideal. First, in the many countries where reproductive technologies, including PGD and prenatal testing, are used to meet cultural and familial preferences for boys, being female is a life-threatening condition—both for the baby girls who are aborted, left to die, killed, or merely neglected throughout their childhoods, and for the women who face shame and violence if they don't deliver a much-desired son. Second, here in the U.S., where gender selection is more often used to fulfill maternal dreams of having a daughter, many observers have noted that mothers exploring gender selection often have a very particular vision of what having a daughter means—one that involves lots of frilly pink stuff.

Some bioethicists go further than the mom mentioned above, arguing that wanting to choose your child's gender is not just a matter of getting what you want, but of exercising complete reproductive freedom. Do parents have a right to choose their child's gender? Seems to me that we can more effectively argue that children have a right to be accepted, by parents and society, as they are, not as we wish they would be.

There are many other issues raised by sex-selection technology. Does choosing the sex of one's child make it that much easier to justify choosing other traits that affect appearance, intelligence, and skills? If the U.S., given the influence that we have in the world, allows parents to select their child's gender for any reason, does that make it harder for authorities in developing nations—where equal rights for women are not well-established—to prohibit the practice for reasons that are clearly discriminatory to women and girls? Although it's a few years old, this article provides some good background on the many ethical concerns surrounding sex selection. I do hope that the FDA's limiting of GIVF's sperm-sorting technology for family-balancing purposes means that someone at the federal level is questioning whether we should allow clinics to do whatever they are able to do, so long as they have patients who desire it and who can pay for it.

Myths and Analogies: The "Happy Parents, Healthy Babies" Argument

2011-04-11T14:12:00.000-04:00

Myth: Reproductive technology has allowed millions of overjoyed parents have healthy babies worldwide. The existence of all of those happy parents and healthy babies effectively nullifies any ethical concerns with the technology, unless you are an uptight alarmist or the Pope.

Response: When British biologist Robert Edwards received the Nobel prize in medicine last fall for his role in developing in vitro fertilization (IVF) technology, I was dumbfounded by the superficial way that media outlets known for rigorous reporting dismissed any ethical concerns with IVF and related technologies. Actually, I wasn’t dumbfounded, as I wrote about it several times.

Much media coverage was simply inaccurate when it argued that only Roman Catholics still care about the ethical concerns surrounding IVF. But beyond their inaccuracy, major media outlets insisted that the existence of so many happy parents and healthy babies means we no longer need to ask moral questions about reproductive technology. NPR’s Robert Siegel began an interview with a bioethicist by asking, “[H]ave four million births through IVF trumped all the moral and ethical questions that were posed by the procedure?” The New York Times wrote, "The objections [to IVF] gradually died away—except on the part of the Roman Catholic Church—as it became clear that the babies born by in vitro fertilization were healthy and that their parents were overjoyed to be able to start a family." In other words, individuals’ happiness and health trumps moral inquiry.

Really? Just think about that as a moral argument for a minute: If something makes a particular group of people happy, and doesn’t have clear adverse health effects, it is beyond question.

The happy-healthy argument in support of an unqualified embracing of reproductive technology is particularly strange because we generally don’t use this argument for other technologies. We live in a technology-saturated culture. And in so many ways, the media and the culture at large spend significant energy looking at the moral questions raised by technologies that have made many individuals happier and healthier. The whole “green” movement, which has become mainstream in both the media and our society, casts a reflective, questioning eye on technologies that, without a doubt, have improved human health and happiness in many ways, but that nevertheless raise moral questions. Electricity, telecommunications, computers, medical technology—all have contributed to longer lifespans and increased opportunities for a long, healthy, prosperous life, at least for people living in parts of the world where such technology is ubiquitous.

I am happier and healthier than I would otherwise be thanks to

my centrally heated and cooled home with its copious electricity and clean water;
the cars that take my husband to work and allow me to visit people I love, carry my kids to and from various enriching activities (including school), ferry plenty of food home from the grocery store, and access health care for me and my family;
the hospitals and medical equipment that have allowed me to maintain an active, full life despite three dozen broken bones; and
the computers that are essential to both my and my husband’s livelihood.

But my health and happiness do not negate the ethical questions raised by all of these technologies—questions around climate change, disposal of dangerous waste products, the health effects of a relatively sedentary lifestyle enabled by labor-saving devices, and huge disparities in income and opportunity between those with access to all of these technologies, and those without.

I am not arguing that parents’ happiness (particularly hard-won happiness after years of heartbreaking experience with infertility) and babies’ health are not worth celebrating. They are. And every child, every single child, no matter how he or she was conceived (and whether or not he or she is healthy) is a gift, not just to the parents, but to all of us.

But celebrating the outcomes made possible by reproductive technology—the happy parents and healthy babies—does not render ethical questions around that technology moot.

A Review of "Carrier: Untangling the Danger in My DNA"

2011-04-04T05:00:00.006-04:00

The biggest frustration of writing and speaking about the ethical questions raised by reproductive and genetic technology is the human tendency to resort to pat, simplistic answers even for complex, difficult questions. Bonnie J. Rough’s memoir, Carrier: Untangling the Danger in My DNA (Counterpoint, 2010) breaks away from these tired and inadequate responses to provide a refreshing perspective on the reproductive dilemmas faced by families with a history of genetic disease.

Rough’s family is affected by an X-linked genetic disorder called hypohidrotic ectodermal dysplasia (HED). A mutation on the X chromosome affects parts of the ectoderm (a layer of embryonic tissue) that develop into skin, hair, teeth, fingernails, sweat glands, and parts of the respiratory tract. Boys who inherit the gene on their sole X chromosome have the disorder, whereas girls usually exhibit few or no signs of the disorder, because they have a second X chromosome with a healthy gene. Girls who inherit the mutated gene, however, are carriers—they can pass the gene to their sons (who will have HED) or their daughters (who will also be carriers). Affected boys and men have sparse hair, small teeth, an inability to sweat (which makes exposure to heat both uncomfortable and dangerous), and are prone to respiratory infections. Rough’s grandfather and brother both inherited HED, while Rough is a carrier.

Carrier moves back and forth between two stories, told in three voices. In chapters exploring her family history, Rough narrates in the voices of either her grandfather Earl or her mother (Earl’s daughter) Paula. In the remaining chapters, Rough writes in her own voice about the decisions she and her husband, Dan, made about having biological children who could inherit HED.

The family history chapters are masterfully written and completely absorbing. Rough’s use of her grandfather’s and mother’s voices could easily have fallen flat as an ineffective gimmick, but the voices come across as authentic and compelling. Earl’s was a tragic story. Always frail, Earl was a businessman with big dreams that ultimately turned into a nightmare for his young family—his wife Esta, two sons, and daughter. For a time when his children were young, it appeared he would make something of himself, as he opened numerous small businesses, including pharmacies, and invented products with true sales potential. But plagued by insecurities and physical pain, he began stealing drugs from his pharmacies. Eventually, his family’s life in a big lakeside home fell apart as he lost himself to addiction and lost lots of money, his own and others’. His big dreams deteriorated into mental illness and delusions of grandeur, as he wrote incessantly to government officials about new inventions, always sure he would soon be called to Washington to be awarded a multimillion dollar contract to pursue his great idea. He died at age 49, wasted away to skin and bones.

The newlywed Rough embarks on a journey to explore her grandfather’s past as she and her husband contemplate whether and how to have children given the chance they will inherit HED. Rough’s exploration of preimplantation genetic diagnosis (PGD), therapeutic abortion (i.e., terminating a pregnancy when the fetus is prenatally diagnosed with a genetic disorder), and genetic risk engaged me because of my professional interest in the subject, and the similarities between her and my own story. Like HED, my disorder—osteogenesis imperfecta (OI)—is neither well-known nor life-threatening. I know firsthand that it’s possible to live a rich and happy life with OI, and Rough knew from her younger brother Luke’s example that it’s possible to live a rich and happy life with HED. Both of us had to face questions, from within and without, about whether it’s appropriate to use reproductive technology to avoid having a child with a disorder that, on the surface, isn’t so terrible.

So often, critics of reproductive technology assert that letting the natural reproductive process happen without intervention is preferable because it does not introduce the potentially flawed element of human choice. Everything is left to chance; parents can't insert their preferences into their procreation. Rough notes, however, that given the availability of PGD and other technologies, even doing nothing is now a deliberate choice: “[W]ith the answers available to our generation, Dan and I knew that having a son with HED would mean that we chose it for him.” When Rough wrote an essay about their procreative dilemma for the New York Times' “Modern Love” column, “Several parents of boys with HED…responded with anger, adding to the chorus of voices saying they wouldn’t think of trading in their children. Of course you wouldn’t! I wanted to scream. Goodness knows I wouldn’t want you to. But I have a choice, you see?!”

Rough turns traditional arguments about the ethics of PGD vs. therapeutic abortion on their head. Many medical practitioners believe that PGD offers a more morally acceptable and emotionally less fraught alternative to prenatal diagnosis followed by agonizing decisions about whether or not to terminate. Two physicians who helped develop PGD techniques, Yuri Verlinsky and Anver Kuliev, make this argument in their classic textbook on PGD, in which they label the technique as “primary preventive medicine,” similar to public health initiatives such as increased folic acid intake for pregnant women. These preventive measures “are ethically acceptable in any population, because they provide the actual gain in infants free of congenital malformations rather than the avoidance of birth of affected children.” Verlinsky and Kuliev point out that PGD and other preventive measures are “better tolerated by society” than pregnancy termination.

Rough and her husband, on the other hand, eventually decide to conceive naturally, undergo chorionic villus sampling (CVS) early in the pregnancy, and terminate if they learn that the baby is an HED-affected boy. “Which would I rather live with,” she asks, “the fact that I had an abortion or the fact that I knowingly brought into the world a child who would suffer because of his inherited condition?...As paradoxical as it seemed, choosing against the birth of an affected baby could be a choice for my child’s sake; the healthy child who might later be born in his place would never know the pain of HED.” The high cost of PGD was one factor in their ultimate rejection of it. But Rough also notes that PGD and therapeutic abortion aren’t necessarily as different as many would like them to be. In both cases, parents are choosing to reject an unborn child with a particular genetic make-up, but PGD makes the process seem cleaner, less personal. With PGD, “I wouldn’t have to feel totally responsible for my choice. Having created embryos by hand from our egg and sperm, doctors—not us—would do the choosing and the discarding in a world so minute that we wouldn’t see any carnage.”

Rough’s story encompasses two pregnancies; I will not disclose how those pregnancies ended in case readers want to explore the book for themselves. While this is a beautifully written book throughout, overall, the chapters about Earl are stronger than the ones about Rough’s childbearing decisions. For many years, I shopped my own book as a pure memoir of the childbearing decisions I faced, and I now see better the limits of this genre for exploring reproductive ethics. Rough’s story is thought-provoking, compelling, and surprising. I appreciated her candor and writing skill. But I got impatient with the detailed recounting of conversations between her and her husband, such as those concerning Dan’s reluctance to have a baby when he wanted more time to explore the world unfettered by a child, and Rough's consuming consideration of PGD vs. therapeutic abortion. We all know husbands and wives tend to rehash the same stuff over and over, but readers don’t necessarily need a front-row seat to the back-and-forth, up-and-down nature of emotionally fraught decision-making. Memoirs are also limited because they necessarily focus on the questions and concerns that were central for the author, neglecting other concerns that may be important for readers. Rough, for example, does not appear to practice any sort of faith that informed her decisions. As a snapshot of one couple’s decision-making, Carrier is a good read. As a tool for exploring the questions raised by reproductive technology, it is limited.

As someone with a non-life-threatening, disabling genetic disorder, and the mother of a child with the same disorder, I also wanted to push back against many of the assumptions Rough, her husband, and peripheral characters made about life with HED. Rough’s telling of Earl’s story proposes, implicitly and explicitly, that his self-destructive and addictive tendencies were directly linked to his HED. While obviously they were intertwined, are they necessarily cause and effect? It's impossible to know for sure. Rough (any of us, really) could end up with a healthy child who becomes self-destructive and addicted, or a child with a genetic disorder who is emotionally healthy, as her younger brother is. Her husband says at one point, “It’s pretty clear that a kid with this condition doesn’t get a good start in life.” Is it? Rough is also sure she would be an overprotective mother if her child had HED. Would she?

My daughter inherited my bone disorder and as a result, has had 10 broken bones in 11 years. She has screamed in anger at how unfair it is, and even at her lowest points (lying in agony just after a fracture), wondered if life with this kind of pain is worth it. I hate OI and what it has done to her, me, and the thousands of other people living with it, many of them more severely affected than we are. But I still found myself wanting to say to Rough and her husband, “Your child will get a good start in life because he or she will have you as parents. You are not doomed to be an overprotective parent even if your child has HED. You may close your bedroom door at night and weep because your child is suffering, because he is in pain, because others don’t understand. You may wish with all your heart that there was no such thing as HED. But once a child is part of your family, it becomes impossible to imagine that a different child, even one free of the pain of a genetic disorder, might have come along to take his place.”

I couldn’t help but read Carrier within the context of my own story. But Carrier isn’t my story, it’s Rough’s story, and she does a great job of telling it. Some of the decisions she and her husband made left me sad, some of them I still don’t quite understand, but she told the story of those decisions with honesty and skill. And the part of the story that centers on Earl is one of the most unforgettable family dramas I’ve read. Whether his suffering, and the pain he caused his family, were ultimately a result of his HED or some combination of factors impossible to pinpoint, Earl’s life story was beautifully told by a granddaughter who succeeded in honoring him even as she told the harsh truth about his flaws.

Japan's Earthquake, Vulnerable Children, and Parenthood's Hardest Lesson

2011-03-21T12:17:00.000-04:00

I wrote a post for Christianity Today's women's blog about the potentially devastating effects of radiation on unborn children in Japan's earthquake-devastated areas, which are also coping with a major nuclear crisis. It touches on issues of interest to blog readers, especially parents' ability (or inability) to manage and control our children or the world they are born into, as well as Jesus' explicit ministry to those who are most vulnerable in any crisis, including the young and the sick.

Update on Friday's Post

2011-03-14T11:31:00.000-04:00

The Family Scholars web site posted a link to Friday's Myths and Analogies series post, about some ethical principles that environmental stewardship and reproductive technology have in common. The post inspired a lengthy discussion in the comments. I posted a long response to the comments today. If you're interested in reading the whole discussion, you can find it here.

Myths and Analogies: Raising Moral Concerns Without Pointing Fingers

2011-03-11T12:13:00.001-05:00

About the Myths and Analogies series of posts: In nearly any discussion of reproductive ethics, certain objections, arguments, and observations come up repeatedly. While usually heartfelt and thoughtful, many of these arguments also draw on misinformation or misunderstanding about why reproductive ethics are important, and which questions are central. In this series, I’ll describe these common arguments and where they fall short, using analogies to do so whenever possible.

Myth: Questioning the moral implications of reproductive decisions is synonymous with calling individual decisions immoral.

Response: This is the hardest part of this work for me—fearing that people who have made difficult, sometimes heartbreaking decisions will think I’m being judgmental, cold, even cruel by raising ethical concerns about genetic screening, prenatal diagnosis, pregnancy termination, and fertility treatment.

I’ve been pleasantly surprised, actually, by how few of those sorts of responses I’ve gotten, and how many supportive e-mails and comments have come from people who have gone through the gamut of reproductive decisions—terminating or not terminating after a prenatal diagnosis; using or not using IVF, egg donation, and surrogacy; choosing or not choosing adoption. I strive to let readers know that, even as I focus on the moral aspects of these decisions, I recognize the complexity and heartache of decisions made in unique, often difficult circumstances. I’m pleased that most readers seem to hear this message.

Nevertheless, any time I write about reproductive ethics for a larger audience, there’s usually at least one person who says, “How dare you judge?” I’ve gotten lengthy e-mails from such people, complete with photos of their IVF-conceived or not-terminated-after-prenatal-diagnosis children. Parents have an understandable defensiveness about their childbearing decisions. After all, there really are no more life-changing, intimate decisions than those concerning whether and how to have or not have our babies.

So am I accusing individuals of being immoral? No…at least usually not.

I do think some decisions, even those made as the result of understandable, all-too-human heartbreak, are not morally defensible. There’s the Australian couple who, after losing a daughter shortly after birth, aborted twin boys and then wanted to use preimplantation genetic diagnosis (PGD) to select only female embryos and ensure the birth of another daughter. There’s the California fertility clinic that continually pushes the envelope, first advertising PGD for hair- and eye-color selection (a plan they withdrew after public outcry), and now marketing sex-selection technology to immigrants and citizens of foreign countries with a clear preference for male offspring. There are terrible abuses of the burgeoning fertility tourism trade, in which poor women in developing countries are paid to carry babies for wealthy foreigners. (I was struck by a scene in the 2008 film Baby Mama, which I watched recently. Tina Fey, who wants to be a mother, is talking to a woman who matches surrogates with aspiring parents. Fey’s character raises her discomfort with the idea of paying someone else to carry her child, and asks a question to the effect of, “We’re not talking about exploiting a poor woman in a foreign country to have a baby for me, right?” The business woman, played by Sigourney Weaver, protests, “Oh no! Nothing like that!” Then, her face registering delight with the germ of a new business idea, Weaver jots a note to herself. It’s funny if you think that hiring poor foreign women to have babies for Americans—the fertility business’ version of outsourcing—is just a ridiculous idea dreamed up for comedic effect. It's not.)

But most people considering reproductive technology don’t go this far. Ideally, everyone who makes these decisions needs to consider the ethical implications—a task made difficult by the lack of resources for ethical reflection, a lack of recognition from fertility practitioners that their work raises moral questions, and the misinformed use of oversimplified pro-life vs. pro-choice rhetoric. I also recognize that reproductive decisions are rarely easy or clear. My goal is to make well-informed consideration of ethical concerns part of both our national conversation on reproductive ethics, and part of the private conversations that take place in fertility clinics and around kitchen tables—not to point a finger at individuals.

Think of today’s national conversation around environmental stewardship or “green” living. For years, environmentalism and climate change were the province of crunchy coastal liberals. But in recent years, these concerns have become part of most Americans’ everyday life. Conversations about “green” living take place in mainstream classrooms, at suburban playgrounds and book groups, and on urban blocks devoting space to organic gardens. People of various political persuasions bring reusable bags to the grocery store, buy fluorescent light bulbs, and have compost buckets in their kitchens. While some on the far left live extreme, off-the-grid lifestyles, and some on the right (including, distressingly, some members of Congress) deny the scientific evidence on climate change, most Americans accept that environmental concerns are important, and are willing to make changes in their daily lives. We recognize that how we use natural resources and care for our earth is a moral issue, and that our daily choices concerning vehicles and trash, appliances and yard work, have moral implications.

But except for extremists who burn down car dealerships and new housing developments, most of us don’t go around accusing our neighbors of being immoral because they drive a minivan or buy strawberries trucked in from California. While we could reasonably argue that America’s materialistic, consumer society needs to change radically if we are to save the earth, we also recognize that individuals ultimately make decisions in the context of their unique circumstances.

For example, I routinely make choices knowing full well they are not very “green”—driving my kids to the bus stop in my Honda Odyssey, drying our clothes in a dryer instead of on a clothes line—because I need to accommodate my physical disability. (I wrote about this recently for a friend’s blog on Chronic Pain and Spirituality.) So when I read an article about how vital it is for us to lower our reliance on gas-guzzling cars and energy-sucking appliances, I feel a little guilty but also know I’m doing the best I can. I certainly don’t send e-mails to the authors of these articles saying, “How dare you judge?”

I’d like to see the ethical concerns raised by reproductive technology become part of our national and personal conversations, just as “green” living has. I would like individuals to think long and hard about their own choices and their implications. I would like us all to recognize that most people are just doing their very best with the lives they have been given to live, that none of us are perfect or unfailingly righteous, and that there is, thank God, such a thing as grace.

Egg Freezing: A Way to Deliberately Postpone Childbearing?

2011-03-09T12:20:00.001-05:00

The Center for Advanced Reproductive Services at the UConn Health Center (where I underwent PGD in 2002) announced this week that six babies have been born after being conceived via IVF using frozen eggs. Dr. Claudio Benadiva (who was my doctor at UConn) said of the study and results, "This new technology has the potential to revolutionize the field of reproductive medicine, offering a clinically viable alternative to women seeking to preserve fertility for medical reasons, or who are of reproductive age but simply not ready to start a family."

In a 2007 committee report, the American Society of Reproductive Medicine (ASRM) stated that egg freezing "should not be offered or marketed as a means to defer reproductive aging, primarily because data related to outcomes are limited." They caution against marketing egg freezing to women who want to deliberately postpone childbearing, in other words, because egg freezing is still considered experimental, not because of an inherent problem with marketing this service for this purpose. If egg freezing studies, like the one at UConn, eventually prove efficacy and safety, will fertility clinics start marketing to women who aren't ready to have babies, because they haven't found the right partner or want to be more financially stable?

I'm intrigued by the ethical questions raised by this possibility. It could possibly nudge fertility medicine a bit farther away from being a specialty addressing medical problems, including infertility and genetic disorders, and a bit closer to being a specialty that provides elective services to people without a medical condition that warrants treatment. In 2001, the ASRM sponsored a controversial ad campaign featuring a baby bottle in the shape of an hourglass. The ad campaign was intended to combat the widespread misconception, fueled by headlines about "miracle babies" and celebrities giving birth in their 40s, that women over 40 can conceive without too much trouble, and just turn to IVF if they do have some trouble. The professional group wanted to educate women about the significant decline in fertility after age 40, as well as relatively low IVF success rates. Instead, however, they came under fire for adding to the pressure that women feel to hurry up and have their babies, and laying all the blame for infertility at women's feet.

If egg freezing becomes a viable treatment, will the ASRM and its member clinicians, instead of urging women to consider the effects of aging on fertility, start encouraging women to hedge their bets by freezing eggs and then, when they are ready, trying to conceive via IVF (which, despite progress in the field, still fails more often than it succeeds and is not risk-free)? Will all fertility specialists embrace this new possibility for their specialty? Or will there be disagreement in their ranks, as there currently is among clinicians who want to market preimplantation genetic diagnosis (PGD) for traits such as hair and eye color, and those who think PGD should only be used to help parents avoid passing on serious genetic disorders?

These are vital questions for clinicians to ask themselves as they continually develop, study, and improve techniques. And those of us interested in the ethics of reproductive technology, either in general or because we're considering using it, need to pay attention to their answers. Reproductive medicine can be perceived as both necessary medical treatment and as big business. How practitioners decide to use and market elective techniques, such as egg freezing, may clarify which of those two dynamics will become paramount.

One reason that women may choose to delay childbearing is to become more financially secure before having babies. Last summer, I wrote an essay in response to a news story about a Washington, D.C., couple that underwent IVF and froze their embryos, planning to have them implanted down the road, when their careers were more secure. This week, a new magazine called Modern Miracles reprinted that essay with my permission. It appears here; scroll down and you'll see my essay, which appears on page 13.

Myths and Analogies: Private Decisions, Public Consequences

2011-03-08T14:45:00.002-05:00

Myth: Reproductive decisions—decisions about whether, why, when, and how to have babies—are purely private. Their intimate, personal nature makes it inappropriate, even offensive, for anyone other than aspiring parents grappling with their unique circumstances to question the moral consequences of childbearing decisions.

Response: Childbearing decisions are indeed some of the most personal, intimate decisions people make. Ultimately, it’s the parents who live, day after day, with the consequences of those decisions—with the grief of living without much-wanted children, for example, or the medical, financial, and emotional struggles of raising a child with a genetic disorder.

With reproductive technology, the act of procreation, which normally takes place behind closed doors between two people, becomes a public, technologized process involving dozens of experts and eliciting advice from professionals, family, friends, and even strangers. Fertility patients are well aware (I certainly was) that their decisions, motives, and activities are scrutinized in a way they wouldn’t be if they conceived the old-fashioned way. And frankly, that’s not fair.

But fair or not, private childbearing decisions have public consequences. As bioethicist Jacob M. Appel has written:

Parenting is among the most personal choices anyone ever makes. At the same time, no other individual decision has as significant a societal impact. Finding a careful balance between personal autonomy and the public welfare is often a considerable challenge.

So just what are the potential long-term cultural and public-health consequences of couples using reproductive technology? I can’t predict the future, but I have a few questions and concerns about where fertility medicine could take us.

IVF may make it possible for genetically based infertility to be passed onto the next generation—an impossible feat with natural conception. Paradoxically, technological methods for overcoming infertility may lead to more people being infertile.
Other breakthroughs in fertility medicine could likewise allow practitioners to essentially create a market for their services. For example, egg freezing is a newer technology (still being studied and developed) that some fertility specialists (including my own fertility doctor, quoted in the linked article above) laud as a way for women to postpone childbearing for career or other reasons. In a culture that so values individual freedom and choice, many will not see this as an ethical concern: Why shouldn’t women be allowed to time their childbearing according to their preferences and circumstances? But fertility medicine is big business, with a greater market orientation than many specialties. Is it morally troubling to have a lucrative medical specialty creating new patient markets for themselves?
Increasing use of preimplantation genetic diagnosis (PGD), which allows couples to screen their potential children for specific genes at the embryonic stage, may erode public support of families raising children with disabilities. If PGD becomes an option for everyone (or at least everyone with means to pay for it), might government agencies and the taxpaying public argue that we shouldn’t pay for expensive health care, special education services, and physical accommodations for disabled children, because their parents were irresponsible in choosing not to ensure that their children were genetically healthy?
Will we be able to draw and hold a clear ethical line between use of PGD for disabling genetic disorders vs. its use for other traits, such as eye and hair color, athletic skill, and intelligence? Many people balk at the idea of “designer babies,” arguing thatreasonable people understand that such a thing is neither completely possible, nor preferable. But there are plenty not-quite-reasonable people in the world. And our culture highly values freedom of choice, giving significant weight to individuals’ experiences of emotional trauma. I would not be at all surprised by a future in which someone who was teased as a child for his frizzy hair, Coke-bottle glasses, or buck teeth argues that it is morally acceptable to use PGD to ensure his child doesn’t have to suffer in the same way.
The market-oriented nature of fertility medicine, and its accessibility only to those with means to pay for it, could exacerbate class divisions. Wealthier Americans might add genetic advantages (the ability to weed out disease-causing mutations as well as have babies with traits linked to success, such as tallness in males) to their already considerable advantages in schools and the workplace. Meanwhile, poorer citizens, already coping with poor public schools, substandard housing, and lack of access to preventive medicine and healthy food, would also be unable to overcome infertility or prevent genetic disorders for which they cannot access adequate medical care. Fertility medicine already caters to a relatively well-off clientele. One of the most interesting facts I learned from Liza Mundy’s excellent book, Everything Conceivable, is that, as with most chronic health problems, infertility is much more likely to affect low-income people than higher-income people. But you never read about a nonprofit fertility clinic in the inner city.

Those are just a few of the concerns I see down the road as reproductive technology grows in scope and capability. Thousands of individual stories and decisions can contribute to significant cultural change. The post-war Baby Boom is a prime example.

The Baby Boom—the high birthrate in America between 1946 and 1964—was the result of thousands of couples deciding to have babies. They might have talked through those decisions at length, in hushed conversations at the kitchen table, or conceived their babies impulsively or accidentally. However they did it, considering the cultural change they might usher in wasn’t part of the process. These were purely private, intimate decisions. But usher in cultural change they did, as their children, by sheer force of numbers, went on to influence how Americans view sex, politics, health, aging, money…pretty much everything.

All childbearing decisions are influenced by external factors. The Boomers’ parents were influenced by post-war phenomena such as the G.I. bill, economic stability, and increasing suburbanization. Today’s parents are influenced by unprecedented choice and available technology, as well as a widespread ethos of parental control and responsibility.

Likewise, childbearing decisions—not necessarily individual decisions so much as the collective power of many individual decisions—influence the culture in which they occur. Perhaps none of my predictions about the cultural influence of reproductive technology will come true. But even if reproductive technology doesn’t influence culture in those specific ways, it will certainly influence culture in some ways. Do we want to just wait and see what happens, or start setting guidelines to ensure that fertility medicine—a specialty so often equated with the exercise of individual freedom of choice—doesn’t end up curtailing freedom, equality, and choice in troubling ways?

Stories from Donor-Conceived Adults

2011-03-04T11:22:00.000-05:00

A Newsweek article on adult children conceived via sperm donation, which I summarized in my last post, included links to two blogs dedicated to telling the stories of these adults, as well as others who have used ART (artificial reproductive technology). As someone who focuses on the importance of people's stories in reproductive ethics, I found both blogs fascinating, offering valuable insights into the consequences of gamete donation for the children thus conceived.

AnonymousUs.org gathers stories (anonymously!) not only from donor-conceived adults, but also from people with experience in other areas of reproductive technology (such as IVF and surrogacy), as well as adoption. Stories run the gamut in terms of whether their experiences were positive or negative, and whether story-writers support or question use of these technologies.

Confessions of a Cryokid is a blog by Lindsey Greenawalt, an adult child conceived via sperm donation. Greenawalt has a clear position on gamete donation and ART:

I oppose donor conception as I see it as the intentional destruction of biological ties and kinship, but I understand that my view is extreme. As a more public alternative I advocate for legislation that regulates the infertility industry and removes anonymity retroactively for individuals conceived with 'donated' gametes.

Her blog has lots of good stuff to read, and I've only just scratched the surface. I was especially intrigued by a post titled "Religion Isn't the Answer (or Even the Question)." Greenawalt is not religious, and argues against the common assumption that those who are opposed to use of reproductive technology must also be religious, anti-gay, and anti-abortion. While (obviously) I am religious and think theology and religion have much to add to the conversation, I agree that the conversation is too often limited by those who lump conservative/religious/homophobic/pro-life/anti-ART sentiments together on one side, and liberal/secular/gay rights-oriented/pro-choice/pro-ART perspectives together on the other. It really shouldn't be surprising that someone can be religious, pro-choice, pro-gay marriage, moderate to liberal, and concerned about the moral questions raised by ART. But apparently, it is.

The Kids Are "Not Quite All Right"

2011-03-02T11:05:00.000-05:00

An excellent article in Newsweek describes the "growing online presence and increasing visibility of the adult children of anonymous sperm and egg donors—kids who are not quite all right."

These are a few of the thought-provoking tidbits that the article offers about gamete donation, as well as the cultural attitudes around infertility and assisted reproduction.

On the unregulated nature of American fertility medicine:

Currently, in the United States, you need a license to sell a condo or cut hair in a salon, but not to broker human life. The $3 billion fertility industry goes largely unregulated, offering blank pages to those searching for information where the rest of us are free to access vital statistics of public record. “I’m not a treatment, I’m a person, and those records belong to me,” says [Toronto journalist Olivia] Pratten...The U.K., Sweden, Norway, Germany, Italy, New Zealand, and Australia have legislated for more transparency pertaining to sperm and egg donation. In those countries it is illegal to sell the means to human reproduction, clinics are licensed, donors are routed through a central agency and cannot be anonymous, and the number of donations is limited. Activists would like to see the same thing happen in the United States.

On the disconnect between a fertility industry that emphasizes the importance of giving infertile couples a biological connection to their offspring, but gives short shrift to the concerns of donor-conceived children who lack connection to one (or both) of their biological parents:

Another complicating factor toward bringing the voices of the donor conceived to the fore is the perception that those who want to know their original heritage are ungrateful for the families they already have. Many people even believe that it’s a nonissue: “love is enough”—but won’t address the hypocrisy inherent in an infertile couple’s desire to have a biological child and yet deny that child’s desire to know his or her biological roots.

I have often felt that one obstacle to widespread consideration and discussion around the ethics of reproductive technology is that people (including me) hesitate to appear insensitive to the pain of those coping with infertility. But one donor-conceived woman and blogger interviewed for this article courageously names this tendency as one of the problems we need to address:

Perhaps the biggest challenge toward being taken seriously is the fact that “society’s collective sympathies go to the infertile,” explains Greenawalt. “No matter what we say they’re going to look through that infertility lens and see us as ungrateful.” Alana S. concurs: “We’ve met infertile couples and we sympathize with them. We’re friends with infertile people and we know their story. America doesn’t have a donor-conceived friend; we don’t have that portrait, that story that we have emotionally connected to, and because there isn’t that emotional connection no one cares.”

Finally, the article discusses a study (which I've also discussed here) showing that donor-conceived adult children carry significant questions about their identity, and are more likely to have depression and anxiety. The study was criticized because it was conducted by an advocacy group that opposes same-sex marriage. But a number of the donor-conceived adults quoted in the Newsweek article feel that bringing in political and religious issues obscures important questions.

Herein lies another complicating layer to the issues of the donor conceived, in the United States legislating “family values” is nearly always conflated with a conservative or religious agenda. “This is not a same-sex-marriage issue, and I’m pissed off that it’s made to be,” says Alana S.

That's something I've struggled with as well, as a moderate-to-liberal Christian Democrat who supports a woman's "right to choose" while also believing that it is reasonable and right to put limits on the reproductive choices made possible by increasingly sophisticated and available technologies.

Reflections on Stories Matter #6—An Unexpected Path to Surrogacy

2011-02-25T14:17:00.000-05:00

Pam's story about having twins via gestational surrogacy has been one of the most thought-provoking of the stories I've heard while compiling my Stories Matter series.

As much as one can become friends with someone via e-mail, Pam and I have become friends. We have some basic things in common, such as being Episcopalians with evangelical leanings. Pam is also interested in continuing to explore the ethical questions raised by reproductive technologies, including the technologies she used—surrogacy and IVF. I have gotten several e-mails from her just raising a question for us to talk (e-mail) about. So often, when people have used reproductive technology, I think they feel they must defend their decisions to the mat. Any questioning of whether aspects of that technology are morally troubling can make them defensive: How can you question the miraculous science that allowed me to have my beloved child? Pam loves her children and is at peace with the decisions she and her husband made. But she continues to ponder the complexity of these decisions. I admire that.

The central theme in Pam's story is the relationship her family built with the two surrogates they worked with. Everyone involved appears satisfied with their relationships with each other and the children born of Pam and her husband's cells and the surrogate's body. Whether it is likely that families and surrogates can build mutually satisfying, respectful relationships with one another seems a key concern with gestational surrogacy. The lack of any sort of ongoing relationship is one of the many factors that bother me about couples hiring surrogates in developing countries, such as India. The author's description of a mutual, enriching relationship between her family and their two surrogates was one factor that kept me from being completely turned off by Melanie Thernstrom's "twiblings" article.

Of course, there are those who reject surrogacy outright, for violating the marital covenant between one man and one woman, and confusing the relationship between parent and child. Online media have been abuzz recently with the story of a 61-year-old gestational surrogate who gave birth to her grandson, conceived via IVF with her daughter's and son-in-law's gametes. I've hesitated to comment on this; it seems yet another sensationalist story designed more to titillate than to encourage serious engagement with the moral questions involved. In this case, it seems the danger is not the lack of relationship between surrogate and family, but the fact that the surrogate is engaged in several powerful relationships with her daughter's family: surrogate, grandma, biological mother.

One ethicist, Margaret Somerville, said this about the surrogate/grandma:

If surrogacy – either in general or in any particular instance – is not in a child’s “best interests,” then it should be considered unethical. The same principle should apply to all uses of reproductive technologies. In looking at ethics, it can sometimes be helpful to make a distinction between repairing nature when it fails, and doing something that would never happen in nature. A grandmother giving birth to her biological grandchild is something that could never happen in nature, and so I’d say no to such surrogacy arrangements.

I cautiously agree that the confused relationships arising from this use of surrogacy are unethical. Although I would not at all be surprised to learn, years from now, that the family handled those relationships gracefully and the child experienced no ill effects. Families can be amazingly resilient.

But I also question Somerville's reliance on the child's best interests as the primary measure of whether reproductive technologies are used ethically. That's such a subjective measurement. Many would argue that it's always in a child's best interests to be raised by nice, loving, stable people—so nice, loving, stable people should do whatever they can to have babies. When it comes to use of PGD, people could easily argue that it's in the child's best interest to ensure that he or she is not only physically healthy, but in possession of traits valued by his or her culture—maleness, for example, or intelligence, blue eyes, blond hair, height, etc.

So by what measures should we determine whether surrogacy or other technologies are ethical? For Christians, a big one is whether the people involved—parents, surrogates, babies—are being valued as beloved children of God, made in God's image. Valuing the "other" as a whole human being (not just a womb or a source of income) is more likely when intended parents are in mutual, respectful, ongoing relationships with surrogates who are not bearing strangers' babies to pull themselves out of poverty. With some uses of prenatal diagnosis, IVF, and PGD (when parents abort babies with relatively mild problems such as cleft palate or an extra digit, use IVF voluntarily for financial reasons, or genetically screen for gender), babies are valued (or not) based on whether they meet external measurements of worth, convenience, and familial and cultural expectations.

Beyond that, figuring out what is and is not ethical gets trickier. That's why it is vital for people considering reproductive technologies, such as IVF and surrogacy, to really explore the questions those technologies raise, preferably before they are under pressure to make decisions. Pam's list of suggestions for other couples, included at the end of her story, are fabulous. I especially appreciated her caution that experts couples might consult, including clergy, might not know enough to provide helpful counsel. I hope that one result of my work in this area is more empathetic and much better informed pastoral care for those facing complex childbearing decisions.

I don't have all the answers when it comes to how Christians should view reproductive technology. But we need to do a much better job of both raising good questions, and providing resources and safe places for conversation and reflection. Pam is a great example of someone who continues to ask good questions and invite conversation, even though her reproductive decisions were made long ago.

Stories Matter—An Unexpected Path to Surrogacy, Part 2

2011-02-24T14:43:00.000-05:00

This concludes Pam's story of having twins via gestational surrogacy. The first part of Pam's story was published yesterday.

An important part of our story is that we were blessed to go through the gestational surrogacy with women like Lynne and Marie. We never had a reason to question their hearts and generosity. We have great respect and affection for each of them and their families. I describe our relationship with each now as similar to that with a cousin you’ve always liked or a friend you were close to as a child or teen but no longer see very often.

These are the major questions/milestones that I remember from our surrogacy experience:

What would the agency and its social workers be like? Could we feel good about working with them?
What would the gestational surrogate be like? What kind of person would want to do this and why? Could we feel good about building relationships with her and her family?
What would IVF be like? How could we fit it into our lives? Would the shots be awful? Would the egg extraction be painful?
After a failed IVF cycle: That was so disappointing; do we have the strength to try again?
After a miscarriage, with some embryos still frozen: We still have the possibility for children; do we have the strength to try again? Is there another wonderful surrogate out there?
When the twins’ pregnancy got complicated at the end: How do we fully support Marie, when we are so anxious about the babies and feel low on emotional reserves?

I don’t want to make this sound like the decisions at each step were easy. Sometimes we got stuck. At these times, I internalized my mother’s adage: Do the next “most right” thing. In the end, I think that we are very much at peace with each decision we made. That said, there are two things that can still test that peace:

I am aware that we were spared some potentially difficult circumstances. What if the pregnancy complications had threatened Marie’s health in some way? What if we still had three embryos stored at the clinic after the twins were born? (As it happened, none were left behind.) Would I feel exactly the same way about our experience if those things had happened?
I sometimes feel insecure about the course we took when confronted with two specific audiences. First, there are certain (typically conservative) Christian groups/people who are 100 percent certain that IVF is non-Christian and evil. Then, there are certain groups/people who think surrogacy of any type is anti-feminist and coercive. Both of these audiences tend to be black and white in their logic and viewpoint. I feel utterly condemned and judged by them, and that makes me feel bad first, and then angry. I don’t know how to make them understand that we were actually there, with lots of other good people, and it wasn’t the ugly situation they would like to believe it to be. Sure, it was sometimes emotionally and spiritually hard and some of it involved medical treatments that weren’t fun or pretty. However, for the most part it was healing, uplifting, and, in the end, totally miraculous.

We are very fortunate in that both of us made decent money in our careers, so finances were not a significant restraint or consideration. I do remember thinking that we were spending a lot of money on infertility treatment. However, it cost about the same as buying an expensive car (which we could afford), yet so much more worthwhile.

The strength of our desire to build a family was a major factor as we started out. We were in the midst of that family-building stage of life, in which having children was the center of our lives and the lives of those around us. We both had a strong desire for our child to have a sibling or two; neither of us had ever considered having an only child before. While we could see ourselves adopting someday, we also knew that having a biological connection to our child was very special; we savored and treasured it.

Another major factor for me personally was that I was still integrating my near-death experience after my first child’s delivery. I was learning to fully accept the idea that life is not perfect, I do not control my own destiny, and I am not immortal. At that time, along with a desire to build my family, I had a tremendous drive to fix what had been broken in my life.

Once we actually started down the path of gestational surrogacy, our faith became an increasingly major factor. We relied on it as we started the journey step by step. We expected God to guide our decisions through people and circumstances and personal direction. I read and prayed a lot, seeking guidance.

Ethical considerations were a less central concern, but still important. I thought and read a lot about the Christian ethical considerations around using reproductive technology. The problem was that (at least at that time) there wasn’t a lot of Christian discussion around infertility except among conservatives, who were completely against any use of reproductive technology. Much of the discussion centered around various aspects of IVF, which was already completely accepted in my social and religious circles. The concerns about giving every embryo a chance at life, in particular, were hard for me to apply. I had ovaries but no uterus, so every embryo my husband and I might possibly create was certain to die. IVF at least gave them a chance at life. There was also a lot of discourse around “the violation of the marriage bed” (i.e., the idea that involving a third party in procreation, such as through gamete donation or surrogacy, violates the marital covenant between one man and one woman). I could never really understand that concern. My marriage to my husband felt private and secure throughout the whole process.

I also thought and read a lot about the ethics of “working with” a gestational surrogate and the issue of compensation being involved. We felt good about our agency’s financial screening (potential surrogates needed to be financially stable). Their stipends were set a level that was gracious but reasonable. Also, both Lynne and Marie are strong women, and in meeting with them, we came to believe it is possible for women to freely choose to do a surrogacy for both altruistic and financial reasons. At the time and in the relationships, we felt a decent level of comfort about the arrangements. That said, I have always been conscious about income inequality and the impact on people and relationships; this is probably the one aspect of surrogacy that I am not quite comfortable with.

We didn’t talk to many people about what we were going through—just our families and a few close friends. We did not want to have a large group of people to update and inform. Everyone who knew about what were going through was very supportive, at least in personal conversation, and willing to discuss all the aspects of our decision-making, from our emotions to ethics. We also had Lynne and Marie and their families deeply involved with us every step of the way. There was a real sense of partnership and mutual support.

I would offer the following advice to others facing complex reproductive decisions because of infertility:

It’s a good and God-given thing to desire biological children. It is normal for those facing a diseased or diminished reproductive system to spend some amount of time, energy, and money trying to make that desire possible. Don’t beat yourself up over this. Focus on trying to figure out what the right path is for you as a couple.
Most people think adoption is the best response to infertility, although they have never for a second considered adoption (much less taken the time to understand the realities of adoption today). Many people will expect you to immediately embrace this option. If those urging you to adopt seem uneducated or inexperienced in this area, ignore them. You may eventually consider adoption, or you may never consider adoption (just like them.)
When seeking the advice of friends and family, try to find people who have actually been through infertility treatment before (or who have been close to someone who has). Ideally, some will be Christians, too. They can give you some things to look out for.
When seeking professional (including clergy) help and/or advice, remember that if someone does not have an understanding of the infertility experience or artificial reproductive technology, the quality of their treatment/counsel may be poor, no matter how well-meaning they are.
Decide in advance how you think and feel about the possibility of creating frozen embryos that you may never “use,” and gear your IVF decision-making (i.e., how many eggs to fertilize, etc.) accordingly. It’s hard for infertile couples to imagine having too much success creating babies, but you need to be prepared because you may have to make quick decisions during treatment.
If you are undertaking a surrogacy of any type, remember the relationship is just as important as the outcome. Make sure you are matched with someone that you enjoy being around and feel great about—someone you would feel proud to introduce to your families and friends. Get to know their husband and children (a good agency or matching service will focus on finding surrogates who are in healthy relationships and who have completed their families). Work hard to find big and small ways to support them throughout the pregnancy.

I’m very grateful that the medical community continues to work on the techniques that helped us complete our family, and helped other people complete their families or prevent undue suffering.

I have a lot of thoughts and questions about third-party involvement in reproduction, including gestational surrogacy, egg donation, sperm donation, and the various combinations of those. I continue to be influenced by having had a positive experience with gestational surrogacy, and actually knowing two women who wanted to give back by helping us have a child. I don’t pretend to have all the answers, but I do feel strongly that trying to oversimplify and attribute particular motives to ALL couples involved in third-party reproduction or ALL egg/sperm donors or ALL surrogates is both incorrect and unfair. Especially when people imply that those involved in these processes are thoughtless, or that their motives are selfish or sinister.

Stories Matter—An Unexpected Path to Surrogacy, Part 1

2011-02-23T11:51:00.003-05:00

With all of the media coverage of Melanie Thernstrom's "twiblings" (siblings born five days apart via two different gestational surrogates), I've been eager to publish a story here about surrogacy. Finally, here it is. Pam is a Christian woman (she describes herself as Episcopalian and evangelical with a small "e"—a description I think I'll adopt for myself!) who ended up having twins via surrogacy. Here is the first part of Pam's story. I'll post the second part tomorrow.

I had a massive postpartum hemorrhage following the birth of my first child (now more than 15 years ago) due to a condition called uterine atony. Uterine atony is when the uterus doesn’t “clamp down” after childbirth, and a large volume of blood keeps pumping through as if the baby is still there. If the bleeding is not stopped, the mother quickly loses most of her blood and will die. I was at a good hospital, and they tried for hours to stop the bleeding but nothing worked. In the end, I had a partial hysterectomy to stop the bleeding. My ovaries were left intact.

The shock of a medical trauma along with permanent infertility was overwhelming, especially when combined with having a first baby and all the joys, fears, and adjustments involved in being a new mom. The joys were intense, because I thought I might never repeat them. The fears were intense, because if I knew if I lost my baby, I might never be a parent again.

My experience and our eventual reproductive choices were interwoven with a life-changing spiritual experience. Today, I describe myself as an Episcopalian who is an evangelical with a small “e.” We have always been active at our parish and at the diocesan level, and I work for a non-profit that is connected to the Episcopal Church. I was raised in a (moderately) conservative Evangelical church and my theology has remained fairly conservative. Similar to many evangelicals, I believe faith should be primary, passionate, and shared. I still rely on the Bible as a primary source of spiritual direction but am not a fundamentalist. On social and political issues, I am a cautious liberal.

But when I had my first child at 28, although my life had certainly not been perfect, I had not yet personally faced a permanent obstacle or disability. Although I had a solid faith, it was not deeply mature, and I had suddenly landed in a place where I needed to ask lots of question about God, why He had dealt me this hand, and His role in my suffering. For me, the time of our infertility decision-making was also an intense period of spiritual darkness, seeking, healing, and (eventually) growth and blessing. When I think back on that time, I think mostly about God working in my life and in our family.

My husband and I made a conscious choice not to talk about family-building options for a full year after our first child was born. We realized we were overwhelmed with what had happened, and we wanted to fully enjoy our time as new parents. At that one-year mark, we started to talk about our options, which we primarily understood to be adoption. The idea of gestational surrogacy had cropped up from reading and the media, but at that time, it was still new and rare. It seemed like some sort of a pipe dream. Also, at the time, the word “surrogacy” was still very much associated with media stories where money-grabbing women end up trying to keep the babies.

We considered adoption first. We did some research, including going to a seminar and speaking to several couples who had adopted. Of note: One of the adoptive mothers we spoke to had looked at gestational surrogacy and said if she were in our shoes, she would look into it further. She was the one who made the option of gestational surrogacy “real” for us, and she gave us the name of the agency we would eventually contact and use.

We first looked into private adoption in the United States, and it scared us. I felt too fragile to go through such an intense and personal process, and then have it fall through at the end. We found two international adoption programs that had promise, but because we already had a child, we found that we could only adopt an older child (toddler/pre-schooler). This fact led us to revisit gestational surrogacy, since we wanted our first child (who was only one year old at the time) to be the oldest sibling.

As we looked into gestational surrogacy, we were struck by its similarity to the private adoption process, although with much less risk. Still, gestational surrogacy continued to feel far-fetched, and I didn’t really think we would actually do it. We took one step at a time, setting criteria for each decision, and moved forward when each decision led us to another step.

In the end, my husband and I decide to undertake a gestational surrogacy as the means to having a second biological child. We worked with an agency that offered extensive screening and social worker support. It was not a smooth road. We actually ended up “working with” (although that never sounds quite right) two women. The first, Lynne, got pregnant after two cycles but miscarried at the end of her first trimester. Then we were left with the decision about what to do with several frozen embryos. Our social worker recommended that for emotional reasons, Lynne not continue (which all of us agreed was a good decision) and that we meet Marie. We had a very good meeting with Marie, and we decided to give gestational surrogacy one last try.

Marie got pregnant right away with twins, and her pregnancy went smoothly the first 32 weeks. I was grateful to have experienced a pregnancy before, so I had a good understanding of what it was like and could fully support her. I think this also helped me to not be envious or too demanding or specific. The hardest part of the pregnancy for me was the low-level stress of not knowing how the babies were doing minute to minute. When you carry a child yourself, you have an ongoing physical connection and some assurance that the baby is doing fine.

At 32 weeks, the twins were almost born, and Marie was put on bed rest. We dropped everything to help her and her family get through that time. The next two weeks were stressful, with us being worried about Marie and also being worried about the health of the babies. Marie was emotionally ready to deliver, while we wanted the delivery to be a few more weeks away so that the babies had a longer time to grow. We were so relieved when the twins were born healthy after an easy delivery. They were 34 weeks old and both just under 6 pounds. We celebrated with visiting family members, along with Marie and her family and friends. Lynne also came to the visit with her children.

Parents Can't Control Everything—And That's a Good Thing

2011-02-20T08:30:00.001-05:00

I can always count on my kids’ dental appointments for a good wallop to my parental self-esteem.

Last week I took the kids for their semi-annual dental cleanings. The kids ratted me out when they confessed to drinking chocolate milk regularly. (After years of pouring tiny glasses of milk that would usually go untouched, I decided to invest in supersized cartons of Nesquick, which has greatly increased the kids’ milk intake.) Our previous dentist had assured me that chocolate milk is fine, but our new dentist apparently reads different studies, because the chocolate milk confession caused visible alarm among his staff.

The dental hygienist, her brow furrowed in a sympathetic, slightly worried sort of way, bestowed on me a printed list of good vs. bad food choices. Besides chocolate milk, pretty much everything that is currently in our snack cabinet was on the “bad” list—crackers, cookies, fruit roll-ups, granola bars, even raisins. And the kids hadn’t even confessed the additional incriminating facts that they drink juice with every breakfast, and that I sometimes let them split a can of diet orange Fanta three ways. (Even sugar-free soda apparently has a high acid content that is bad for teeth.)

I’m 42 years old and have never had a cavity. Neither have any of my kids, although our diet is far more sugar-laden than the diets of families I know whose kids have had numerous cavities. I’ve interpreted this as evidence that, at least in the case of dental health, nature trumps nurture, big time. When the dentist praised me yesterday for my children’s cavity-free smiles, I responded cheerfully, “Well, it sure doesn’t have anything to do with our eating habits!”

In admitting that, and in eschewing parentally regulated snacking in favor of a self-service snack cabinet that my kids can access themselves, within some clear guidelines, I am rejecting not only the dentist’s approved snack list (which is now in my recycling bin), but also the culturally prevalent ideal that parents can and must exercise total control over their children’s well-being.

So I was gratified to read an article later that day that also rejects this parenting ideal. The article by Katie Roiphe (published by Slate back in November—timeliness has not been my forte of late) is certainly not the first thing I’ve read that pushes back against the guilt-inducing, logically questionable insistence that parents can ensure their children’s health and ultimate success by making precisely calibrated choices about everything from diet and schooling to toys and playmates. Recent years have seen a lively trade in books and articles about so-called “bad mothers” or “slow parenting.”

But with the dental hygienist’s subtle but firm rebuke of my family’s eating habits still ringing in my ears, I was particularly in need of yet another reminder that children who eat cookies, tease and fight with each other, and conceive of their own art projects because their mom is certainly not going to do that for them, can actually turn out OK. In fact, Roiphe argues, ceding control over our children’s lives may actually better equip them for life, given how imperfect life turns out to be:

You can't control everything; the universe offers up rogue moments that will make your child unhappy or sick or broken-hearted, there will be faithless friends and failed auditions and bad teachers. The one true terrifying fact of bringing an innocent baby into the fallen world is that no matter how much rubber flooring you ship to the villa in the south of France, you can't protect her from being hurt. [Roiphe opened her article with an anecdote about a friend who covered the stone floors of her French vacation home with rubber mats to protect her child.]This may sound more bombastic than I mean to be. All I am suggesting is that it might be time to stand back, pour a drink, and let the children torment, or bore or injure each other a little. It might be time to dabble in the laissez faire; to let the imagination run to art instead of art projects; to let the imperfect universe and its imperfect children be themselves.

A reader of this blog e-mailed me the link to this article (again, back in November…sigh). Its central premise—that parents not only cannot, but really should not try so hard to control our children’s well-being because by doing so, we’re attempting to protect our kids from the limits and imperfection that are part of being human—has much to do with making decisions about reproductive technology. This technology, from contraception to IVF and genetic screening, offers us the ultimate promise of control—control over the timing of conception (so parents can be sure to have optimal financial stability and the healthiest space between siblings), and control over genetics to ensure not only health but also future success, intelligence, and productivity.

I won’t go so far as to say that all use of reproductive technology is a futile attempt to control what cannot or should not be controlled. Human control over the natural world can be a great blessing. Antibiotics control the capricious cruelty of infectious disease. Seawalls and pumping stations control waterways prone to jumping their borders and devastating human habitations. By exerting what control they can over soil, water, and crops, farmers feed the world. I’m well aware that medical advances such as surgery and medication have controlled the effects of my and my daughter’s bone disorder to such a great extent that we can participate fully in family and community life, whereas those born with this disorder a hundred years ago would have suffered with much more significant pain, disability, and exclusion. I’m also extremely grateful for effective contraception that frees me from worrying about how another baby would affect my mental and physical health.

But I think it’s useful to evaluate reproductive technology in light of what I have previously referred to as “the child-as-project mentality that permeates modern American parenting.” Roiphe asserts that:

One of the more troubling aspects of our new ethos of control is that it contains a vision of right-minded child rearing that is in its own enlightened way as exclusive and conformist as anything in the 1950s. Anyone who does not control their children's environment according to current fashions and science, who, say, bribes their child with M&Ms or feeds their baby non-organic milk or has a party that lasts until 2 a.m., is behaving in a wild and reckless manner that somehow challenges the status quo.

Just as many parents like me face daily pressures, subtle and not so, to feed, entertain, supervise, and educate our children in particular ways, so do parents-to-be face similar pressures to produce children with the greatest chances of becoming good, healthy, productive citizens—children with good genes, nurtured by exemplary maternal health and diet, and birthed according to prearranged plans that encompass everything from the space between siblings to detailed scripts for what will occur in the delivery room.

All of these pressures are justified in the name of health and well-being for the children, their families, and the larger society. When my friend Amy Julia wrote for the New York Times about why she doesn’t perceive her daughter’s Down syndrome as a tragedy necessitating genetic screening in subsequent pregnancies, many commenters essentially said, “Just you wait. When your daughter is grown, she will be a burden to you, to her siblings, and to the rest of us.”

Conversations about reproductive technology are inevitably colored by the language of reproductive choice. Many on the left hesitate to question technological reproduction because it might lead to questioning abortion rights. But the unregulated and expanding menu of reproductive choices offered to today’s parents is actually indicative not of unlimited freedom and choice, but of highly constraining expectations of what good parents should do.

I’d like to be part of a parental culture that expends a bit less energy on whether our kids’ milk is organic, local, hormone-free, or (gasp!) chocolate, and a bit more on all the ways that market-oriented, unregulated reproductive technologies feed on cultural pressures for parents to firmly control the outcome of their procreation, to seek perfection in an endeavor that is inevitably—and wonderfully—imperfect.

Stories Matter—Choosing Not to Screen for Down Syndrome

2011-02-07T14:36:00.000-05:00

Regular readers are familiar with my friend Amy Julia Becker, who blogs about disability, reproductive ethics, and other topics at her Beliefnet blog, Thin Places. She also made quite a stir on the New York Times Motherlode blog last fall, when she wrote about her decision not to do prenatal screening for Down syndrome during her third pregnancy. Amy Julia's oldest daughter, Penny, has Down syndrome. This is the story of how that fact has informed her decisions about prenatal testing during her second and third pregnancies. When I conducted this interview last summer, Amy Julia was newly pregnant with her third baby. Last week, she gave birth to a little girl named Marilee.

During her first pregnancy, Amy Julia did the 16-week quad screen blood test. She knew they would not terminate the pregnancy if a problem arose, but she was happy to have health information that would help them care for their child. She received a concerned call from the doctor’s office indicating that the chance of the baby having Down syndrome was higher than normal. She did not agree to an amnio, which would have provided a definitive diagnosis, but did agree to a Level 2 ultrasound. The ultrasound technician confidently said that the baby did not have Down syndrome.

“I didn’t give it another thought,” recalls Amy Julia. “I thought the one thing that was guaranteed in this pregnancy was that the baby did not have Down syndrome.” But her daughter Penny was diagnosed with Down syndrome two hours after she was born.

Amy Julia then had two “chemical pregnancies,” in which an early pregnancy test was positive but shortly after, the test was negative. Doctors were concerned that perhaps Amy Julia and her husband had a higher risk of genetic anomalies, but all of their tests came back as normal. Eventually, she became pregnant with her second child, William.

With her second pregnancy, “I was much more aware of termination rates of kids with Down syndrome, and more concerned with the ethics of prenatal testing,” Amy Julia recalls. “I recognize that it can be helpful and a way to care for babies, but also that a lot of women feel pressured and there is a lot of misinformation. People I know have received calls about abnormal tests and then have immediately been asked when they would like to schedule the termination. I questioned how much I wanted to buy into these assumptions and the idea that we can control what kind of child we get.”

But Amy Julia was also aware that Down syndrome can involve major heart defects and wanted to be prepared for that possibility. She was unwilling to do amnio, but agreed to do an ultrascreen blood test, which specifically looks for Down syndrome, although she was also bothered by “the idea that we’re specifically looking for this particular abnormality—which my daughter has—because it is assumed to be so undesirable.”

The ultrascreen showed that the baby and his heart were just fine, after which Amy Julia was “incredibly relieved.”

When she later learned that the baby had a 1 in 10,000 chance of having Down syndrome, the news was so unimportant that she literally forgot to tell her husband. “I was really most concerned about whether there was a life-threatening heart defect, about whether this child was going to live. Once I knew that wasn’t the case, whether or not the baby was at a higher risk of having Down syndrome wasn’t that important.”

Years later, in researching prenatal testing options for her third pregnancy, Amy Julia discovered that the ultrascreen is not as definitive as she was told it was. It is 90 percent effective in predicting Down syndrome and 40 percent effective in predicting heart defects. Amy Julia assumes that her doctor either didn't know these statistics or that the doctor wanted her to have the test even though it wouldn't give her the information she wanted.

Amy Julia is now pregnant with her third child. While she knows she is at higher risk of having another child with Down syndrome and thinks it’s legitimate to be concerned about a baby’s health, she is confident that an ultrasound will reveal any major problems, and will forego any more extensive testing.

Amy Julia is troubled by doctors’ attitudes toward prenatal diagnosis, which assumes that parents need to know if something is wrong so that they can terminate the pregnancy and avoid so much suffering. But she has also grown in her compassion for doctors, understanding that in their medical training, they have often seen the sickest children and so have a skewed perception of the suffering that comes along with certain disabilities and diagnoses.

“My family and people who really know us were utterly supportive and really believed me when I said I’d be happy to have another child with Down syndrome but do want to be prepared if my child has a major health problem. We live in a boarding school community where many people are very intellectual and the majority have no faith or spiritual life. With my second pregnancy,” Amy Julia says, “It felt like everyone on campus said, ‘I assume you’ll get an amnio,’” which felt like, ‘I assume you won’t make the same mistake again.’ No one came out and said, ‘I can’t believe you’re doing this.’”

Amy Julia often talks to other women who are making decisions about prenatal diagnosis. She encourages them to really think about what is necessary, and whether they want to participate in the assumptions of prenatal testing (that it’s best to terminate pregnancies if something is wrong). “I try to leave it open and not tell people what to do, but to share my experience and provide some hope. People need to really think about what they will do with the information that comes from prenatal testing.” And while she respects and understands that individuals making difficult reproductive choices are not purposefully contributing to cultural changes, she also feels that individual choices can contribute to cultural changes and the assumption that we have control over life and death.

What's Up with the Blog

2011-02-07T14:25:00.000-05:00

Later this afternoon, I'll be posting another installment of "Stories Matter." First, I just wanted to share a few updates and coming attractions.

I'm pleased to report that Choices That Matter has been approved for inclusion in the Christian Century Blog Network. The Christian Century is an ecumenical, progressive magazine focused on mainline Christianity. Their blog network "is a community of independent bloggers exploring the Christian faith. The Christian Century facilitates the network but does not edit posts or take responsibility for them." A number of blogs that I read and respect are part of this network; I'm proud to join them.

I'm also excited about some upcoming posts on the blog. With all the conversation in recent weeks about the "twiblings" and surrogacy, I'm looking forward to publishing the first "Stories Matter" installment from a mother who had children via gestational surrogate. I'm finalizing some edits and permissions, and hope to publish this compelling story in the next week or two.

In my ongoing email conversations with this mom, we've discussed a number of analogies that shed light on the ethical questions raised by reproductive technology. This sparked the idea for an "analogies week" on the blog, when I'll introduce several analogies that might help readers better grasp some of the moral concerns with assisted reproduction, and why they can be so hard to talk about in a meaningful way.

If there is anything you're interested in reading more about on this blog, please let me know!

Reflections on Stories Matter #4—Resisting the Urge to Know

2011-01-26T12:14:00.000-05:00

On Monday, I published Melissa's story, about her proactive decision not to pursue any prenatal genetic testing during her first pregnancy.

As I move forward in writing my book and more deeply exploring reproductive ethics, I've gotten clearer about my goals. I have some ideas of concrete steps to address specific ethical issues raised by reproductive technology, such as enforcing limits on egg-donor and surrogate compensation, banning genetic screening for non-medical purposes, and upholding every parent's right to have professionals respond to a difficult prenatal diagnosis with good information and sympathetic counsel, rather than with dire warnings and pressure to terminate.

But my overarching goal is simply to encourage more people, and especially aspiring parents and those considering use of reproductive technology, to more thoughtfully consider the moral, cultural, and medical implications of that technology. That would require churches and other institutions providing ethical guidance, as well as clinicians, to recognize the complexity of reproductive decisions in light of growing technological prowess, and provide resources (reading material, counseling, etc.) to parishioners/clients/constituents/patients. And it would require aspiring parents to willingly engage in proactive reflection.

I included Melissa's story in my Stories Matter series as an example of someone who proactively thought about how technology (specifically, contraception and prenatal diagnosis) fits into a Christian world view. To Melissa, her faith demands that she see every person as a gift. Her faith combined with her experience in a L'Arche community led her to take this idea further; people with disabilities are not just to be tolerated, but to be embraced as making their own unique contributions.

I have corresponded some with Melissa over the past few months, and know that she is well-equipped for such proactive and thoughtful contemplation. Besides her experience in L'Arche, she is studying for a graduate degree in theology. But I would love to see a day when even people without experiences like these that intrinsically inspire deeper moral inquiry are encouraged, and willing, to really think about the implications of reproductive decisions. If pastors and lay leaders were better informed about reproductive ethics, if fertility clinics provided resources for counseling before patients are faced with complex decisions, if we would all realize that the mere fact of healthy babies and happy parents resulting from reproductive technology does not nullify ethical concerns, then perhaps you won't have to be an inquisitive theology student to give serious thought to whether, how, and why you will have children.

Stories Matter—Resisting the Urge to Know

2011-01-24T14:34:00.000-05:00

Melissa is a young mother of one daughter who, with her husband, proactively decided to refuse any prenatal genetic testing during pregnancy. While some of Melissa's genetic heritage is unknown (because her own mother was adopted), she was not aware of being at risk for any particular genetic disorders. So she, in other words, is like the majority of women who show up at their doctors' offices early in pregnancy and are offered a number of routine prenatal tests to find out if the baby is healthy. She is unlike many of those women, however, because she went into her pregnancy already having a solid rationale, in part based on her experience living with people with intellectual disabilities and in part based on her Christian faith, for refusing such tests.

We were fresh out of a year living in the L'Arche community, a home for men and women with intellectual disabilities, when we discovered I was pregnant with our daughter. Theologically, we already believed that life began at conception. For this reason we decided to be sure that my womb would be a place of welcome. While we didn't feel the need to prevent conception (as per Catholic moral teaching) we did strongly believe that if conception did occur we wanted my body to be ready to nurture whatever life we received. This meant I did not take the Pill, as we had concerns that its use could prohibit implantation. In the end we decided to practice the Fertility Awareness Method, a form of natural family planning.

When I finally did become pregnant we knew we would refuse genetic testing. While at 26 this was a less urgent choice, my mother is adopted and very little is known about the genetics of her family. What I worried about most was cystic fibrosis. I knew we could love and even enjoy life with a child with an intellectual disability. But to see my child suffocate to death from fluid in her lungs was too much to even imagine. I feel like I held my breath from the time she was born until we received the results of her post-birth screening.

Our decision to welcome a child as he/she is, without undergoing a lot of prenatal testing, was clear, but it took living with people with disabilities to understand that our choice didn't mean the end of the world. I think there's a big difference between being willing to "take what you get" and knowing that every person can be a gift to another. That's what we learned in L'Arche. We knew people who were severely disabled, who lived in a permanently vegetative state. Their lives were rich because others loved them, sat with them, bathed them. They also enriched others. They taught us to be still and quiet. They taught us to communicate through touch. We learned to question the privilege of the rational, independent self.

So while we never would have considered terminating the life of a disabled child, L'Arche allowed us to expand our imaginations in regards to the potential of a child who did not meet our expectations. And through that our expectations changed. We thought differently about pain, flourishing, being and worth. Our minds and hearts were transformed. While we have no illusions that welcoming a child with a disability would be easy or painless, we also know real flesh and blood people who have thrived in community because of their need for dependence.

Religious factors are primary in our decisions about children. Those are what keep us anchored in hope, regardless of what happens. (We are adult converts to the Mennonite Church; no head coverings but yes on pacifism, priesthood of all believers and simplicity.) The fear comes from money. Living in L'Arche we had a very good sense of the day-to-day difficulties of navigating the system as a disabled person. I remember once trying to find a new doctor that would take one of our "core member's" state insurance. I tried for hours, called fifty doctors. At the end I just wept. How was it possible that no one would take care of our friend? What happened to all those people who didn't have a support system? I think a lot about the worry parents face when imagining what will happen to their child. It seems overwhelming.

Doctors are almost entirely unhelpful. It was never clearly said to us "you want to get this test because you might not want the child in there" but it was certainly implied. The doctors certainly could not fathom why we wouldn't want to know.

To others weighing decisions about prenatal testing and diagnosis: Carefully think through why you really want to know about your child's genes. What will actually change? I know that a lot of people who get these tests simply "want to know," to be prepared. But I always wonder, shouldn't be always be prepared to welcome the difference and potential difficulty of a child? There are so many mysteries to a child, even a genetically "normal" child, that we could never know. Would we like to know if she will die of leukemia at 6? Or be an alcoholic by 30? Do we want to know if she'll be crippled in a car accident? My sense is that it would radically change reproductive technology if we resisted the urge to know and lived in the painful but hopeful potential of the present.

I have reservations about divorcing sex from conception, although I think there are case-by-case examples of people who do this faithfully. My primary concern happens to be for Christians and those in other religious traditions who do believe life begins at conception. I think these people have been pulled into the framework that fertility treatments and eugenics are completely normal. It's frequently a thoughtless choice and one so charged with emotion that it is difficult to even begin the conversation without seeming self-righteous or heartless. So we've let friends, family and church members create lives on ice without knowing how these lives will be given the opportunity to flourish. We have feared death so strongly that we are willing to create and destroy other children, to use people for their spare parts.

"The questions are endless, but the time is ripe for us to discuss them": Possible Effects of a Cheap, Simple Prenatal Test for Down Syndrome

2011-01-22T14:50:00.001-05:00

Brian Skotko, M.D., a consistent and compassionate voice urging medical providers to provide better information when couples receive a prenatal Down syndrome diagnosis for their baby, has written a brief article about a potential new prenatal test for this condition. A British Medical Journal article recently reported that it is possible to discover whether an unborn child has Down syndrome (Trisomy 21) through a simple, non-invasive, completely safe maternal blood test. Currently, a definitive prenatal Down syndrome diagnosis requires an invasive test, such as chorionic villus sampling or amniocentesis. The tests are costly and, because they raise miscarriage risk, unappealing to many parents. It's likely that this new blood test technique would allow all pregnant women to safely know for sure whether they are carrying a baby with Down syndrome, and the test would likely be cheap enough that insurance companies would cover it.

As a result, more and more parents will decide whether or not to terminate a pregnancy when the fetus does have Down syndrome. Given that more than 90 percent of women who receive such a prenatal diagnosis currently choose termination, the numbers of babies born with Down syndrome would go down drastically. Skotko argues that such a possibility raises important questions for medical practitioners, parents-to-be, and society at large.

First, medical practitioners must be equipped to provide more comprehensive and balanced information to parents who receive a prenatal Down syndrome diagnosis. According to Skotko's previous research,

the majority of medical students argue that they get minimal education on children with intellectual disabilities; and nearly half of obstetric fellows claim their residency training is “barely adequate” to “nonexistent” in terms of how to counsel would-be parents of a child with intellectual disabilities. Some physicians who do routinely deliver a prenatal diagnosis also admit to purposely describing Down syndrome in negative terms. Not unexpectedly, then, many mothers feel that they receive inadequate, incomplete and sometimes offensive information about children with this condition.

Second, universal testing for Down syndrome raises questions not only about the value of people with that disorder, but also about how increasing access to prenatal genetic information of all kinds will affect both childbearing decisions and cultural mores. As Skotko discusses:

Currently, 92% of all women worldwide who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy. Based on those numbers, what does the future hold for the Down syndrome population once the new prenatal tests are available? The answer lies nestled in profoundly personal decisions, but still raises an important question, one that will be asked more and more frequently as other forms of prenatal testing come to the market: which forms of human genetic variation are valuable, and which are not?

These will be private and difficult decisions for parents to make, but at what point should our professional organizations weigh in? Should expectant parents be able to select out fetuses based on the sex alone? Should an expectant mother be allowed to test her fetus for an adult-onset condition, like breast cancer? If genes are one day identified that shape a person’s sexual orientation, do parents have the right to know that information prenatally?

Skotko concludes with a simple recommendation that is made complicated by the fast pace of technological innovation without sufficient public education and moral deliberation:

The questions are endless, but the time is ripe for us to discuss them. Let’s begin those conversations now, before the tests force us to do so.

Do Words Like "Gestational Carrier" Dehumanize?

2011-01-21T15:10:00.002-05:00

I've read two articles this week arguing that terms such as "gestational carrier" and even "reproduction" dehumanize that most human of activities—the creation of a new human being from a man and a woman. Both mention Nicole Kidman and Keith Urban's announcement this week that they have a new baby, thanks to their "gestational carrier." One article is from an Australian newspaper, and the other appeared on Her.meneutics, the Christianity Today women's blog where I contribute posts every couple of weeks. Jennifer Lahl, founder and president of the Center for Bioethics and Culture Network, wrote the Her.meneutics post, and part of her discussion about the language of reproduction is found in her comment, not the original piece, so its worth scrolling down (and skipping over some of the more extreme and/or nonsense comments).

(Tangent: I'll be writing more about Jennifer's work and her recent award-winning documentary, Eggsploitation, soon. She has done a lot of work exploring the risks of fertility treatment and egg donation to women's long-term health, which is of particular interest to me given that I'm being treated for breast cancer eight years after undergoing PGD. A whole new area to explore...stay tuned.)

So what of this concern about language? As a writer, I value precise language, and also firmly believe in the power of language to influence how we think about things. I don't like euphemism; say what you mean. On the other hand, I think tone, context, and words work together to make a speaker's or writer's intent clear. For example, how often have you heard someone say, "With all due respect..." in a way that makes crystal clear that respect is the last thing on their minds? I've conversed with women who have become mothers with the help of other women willing to be gestational surrogates, and it is clear from tone and context that the babies' parents would never intentionally dehumanize the women they see as trusted partners in their family's creation. Whether the process itself, regardless of intention, dehumanizes the people involved is another, more complex question.

And this is yet another reminder of one of the key difficulties in having meaningful conversations about reproductive ethics—some of the most private, intimate decisions known to humans have public and cultural consequences. I have often said that the commodification of children—their transformation from gifts to be accepted as they are, to products manufactured to parental specifications—is one of my biggest concerns with reproductive medicine. Some people who have used technology to become parents are understandably offended by that, because they see their children as nothing more or less than the greatest gift they've ever received. I can argue that I'm questioning an overarching quality of reproductive technology in general, not the motivations of individuals who use that technology. I'm questioning the technology's moral implications for our culture, not the whether individuals who use the technology are immoral. But those distinctions are understandably hard to stomach when people like me are questioning the ethics of some of the most private, life-changing, difficult, and complex decisions people will ever make—whether, and how, to become parents to beloved children.