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- The Surprisingly Unreligious Lives of American Muslim Teens
- An Independent Muslim-American Press? Texas Entreprenuer Is Making It Happen
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- Your Grandmother's Islam: Can Religion Be Separated from Culture?
Top Posts on Religion Writer
Nov
30
Does God Want Us to Genetically Improve Our Children?
November 30, 2007 | Leave a Comment
Hold onto your socks, it’s time to think calmly about a topic that quickly, and sometimes frighteningly, blurs the line between science and science fiction: directed evolution — altering our genetic makeup in ways that can be passed down to future generations.
Want to hear the scary part first? Consider that in a matter of years, we will most likely have the ability to change snippets of genetic information in an early stage embryo (created by in-vitro fertilization and then implanted in a mother’s womb) and thereby create a child who is taller, or stronger, or less at risk for cancer, or, more controversially, less likely to be homosexual.
Even for people who aren’t religious conservative or environmentally radical, that degree of power over a child’s genetic endowment can seem frightening and too open to abuse. Will those with money and access create über-offspring who eventually rule over the genetically inferior? Will children become commodities, with parents picking and choosing traits from a genetic menu? Will scientists unwittingly damage such children even as they seek to enhance them?
These monstrous scenarios are explored by Ron Green, director of the Ethics Institute at Dartmouth College (and former undergraduate thesis adviser to ReligionWriter), in his new book, Babies by Design: The Ethics of Genetic Choice. But as scary as these possibilities are, Green takes a progressive view and firmly asserts that the benefits of such genetic intervention may, in some cases, outweigh the risks. These ethical questions are not simply academic brain-teasers, asserts Green, founding director of the NIH’s Office of Genome Ethics, because scientific advances are rapidly bringing the hypothetical to life. He writes:
Whether in ten, twenty, or thirty years, the first deliberate inheritable modifications of human genes will take place. … Having vastly expanded our control over the world around us, our species is now rapidly developing the ability to alter the world within. The question is not whether we will do this but when and how.
[Most people, of course, don’t keep up with the latest developments in genetic engineering, but Green shares at least one breakthrough that shows how truly amazing the progress is. He describes how University of Utah researcher Mario Capecchi and fellow scientists have discovered a way to not only add specific genetic material to targeted areas of the human genome, but also “unzip” and remove the added material at a later date. Previously, genetic interventions were both cruder and permanent. (Not coincidentally, Capecchi was awarded the Nobel Prize in Medicine in October.)]
Does Genetic Intervention Infringe on God’s Power?
But back to the headline question: What would God do? That is, does religious faith or compassionate humanitarianism obligate us to improve lives and relieve suffering? According to Pope John Paul II, the answer is yes.
Writes Green: Although that pope “took a very conservative position on many new bioethical questions, [he] repeatedly approved of gene therapies so long as they respected other Catholic reproductive norms (such as the bans on contraception and IVF) and were aimed at curing or preventing disease.” Of course, the former pope’s word is not the be-all and end-all on religio-ethical debates for most people, but it is certainly significant that a leader of such stature gave the green light to genetic modifications, even those that can be inherited.
In spite of such religious A-OKs, however, many people — regular folks and bioethics professionals alike — have serious reservations about tinkering at all with the human genome, which the United Nations has declared the “heritage of 
humanity.” Writes Green:
According to a long tradition in the Jewish, Christian and Muslim faiths, the original divine act [of creating Adam] repeats itself every time a new human comes into existence. … For those influenced by these traditions, human control of genetic makeup represents a Promethean seizure of God’s power. Some, like Leon Kass, the former head of President Bush’s bioethics council, regard genetic intervention … as the effort by limited and puny creatures to seize control of the one domain that is God’s alone.
RW agrees with Green that this conservative view, that genetic intervention is inherently blasphemous, is problematic. Green points out that even the very conservative are comfortable with other modifications of God’s creation, such as surgery. To RW, however, this conservative view also has some theological problems.
If you believe that God is all-powerful, then how can “puny” human power ever threaten that power? Omnipotent means omnipotent, right? RW sees this same theological problem on the Catholic ban on birth control — can God’s will really be thwarted by a condom? As many parents know, even the best-laid birth control plans can be overturned with a surprise pregnancy.
Is It Right to Enhance Our Children?
Where Green intentionally pushes the envelope is his argument that gene intervention for enhancement, rather than just therapeutic, purposes should be considered. Think plastic surgery rather than heart surgery. Plastic surgery, of course, is often looked down upon as a shallow pursuit of skin-deep beauty. Yet procedures like LASIK, which correct vision, are considered more acceptable.
What if you could have an operation to improve your memory? That might not seem like such a bad idea, if the associated risks were low. If so, what is your argument against a genetic intervention that would give your unborn child — and his or her offspring — enhanced mental capacities?
Green argues that most of us suffer from a “status quo bias” when it comes to thinking about changing our DNA. If it seems unfair to genetically enhance a child’s athletic abilities, Green invites us to consider the fact that genetic endowments are already unfair. Athletes like Lance Armstrong, Green points out, have been shown to have key inherited traits — long femur bones, lungs capable of taking in large amounts of oxygen — that give him an inborn advantage over competitors. In other words, the current playing field is not as level as it seems, and genetic enhancement could, in some cases, even work to make things more fair, writes Green.
Green’s message throughout the book seems to be: Yes, the new world of genetic modifications presents complex and sometimes scary possibilities, but we don’t need to reject them out of hand; we can think rationally about them. Such a calm, careful and even hopeful voice serves an important purpose — but as divisive public debates over stem cell research, abortion and Terry Schaivo have showed, such thinking often becomes lost in the shouting.
Oct
18
Waiting for Baby vs. Waiting for Death: Reflecting on End-of-Life Ethics
October 18, 2007 | 1 Comment
Should dying Americans have the legal right to end their lives with help from their doctors? In Oregon, they have already had the right for the last ten years, since the state passed its “Death with Dignity Act,” after great controversy, in 1997.
Last week the Pew Forum on Religion & Public Life hosted a polite but pointed debate between two formidable players with very different points of view. ReligionWriter, attending the event, watched the two expertly zing the argument back and forth across the court, as Pew senior fellow David Masci umpired the match. And the winner? You’ll have to decide for yourself.
Autonomy vs. the Slippery Slope
The debate was not about religion per se. Leon Kass, former chair of the President’s Council on Bioethics, who opposes legalized aid in dying, asserted that his objection was not theological:
For me, it’s not a religious argument that your life is not yours, and therefore you submit to whatever comes your way, though I suspect if one thought that there might be less mischief done.
Rather, said Kass, his objection was not only that the Hippocratic Oath specifically forbids doctors from giving “deadly drugs” to those who ask for them, and that, in his view, the State of Oregon does not adequately ensure the law is not abused, but also that legalization of aid in dying leads to a slippery slope, at the bottom of which is a society where old or disabled people are encouraged to see themselves as “better off dead.”
Barbara Coombs Lee, president of the pro-aid-in-dying organization, Compassion & Choices, argued that the slope is not slippery at all, that ten years of Oregon’s Death with Dignity Act have not led to involuntary euthanasia or other horrors, and that many people simply take comfort in knowing they have an option and the right to exercise it. Said Coombs Lee, Oregon’s current law
assures that moral authority resides with individuals. … To assume moral agency for our own important life decisions from the time we achieve decision-making capacity to the time we die, that is what dignifies us as human beings, not the decision that we make.
Choosing to take life-ending medication prescribed by a doctor is not suicide when you are already facing an imminent and painful death, said Coombs Lee. She referred to Tom McDonald, a cancer patient who testified before California’s Senate Judiciary Committee when it was considering a right-to-die law (the law did not pass.) McDonald told the committee he would rather end his own life peacefully with doctor-prescribed drugs than face a death that, according to his doctor, will involve him drowning in his own blood when his tumor ruptures his pulmonary artery. Coombs Lee remarked at the Pew event: “I think McDonald deserves a right to determine the memories that his family will be left with when he dies.”
Parallels: Entering the World, Leaving the World
Far from such rarefied Washington D.C. discussions, a very different yet strangely similar debate goes on, this one among pregnant women on messages boards at popular sites like iVillage and BabyCenter.
The question facing those in advanced pregnancy is often this: Whether or not to hasten the birth of their child. Medical inductions are on the rise in the U.S., as are elective Cesarean sections. Parents talk about their desire to control the circumstances of the birth, for any number of reasons, such as avoiding perceived health risks or scheduling the birth for family convenience.
For those who believe in “natural childbirth,” however, something is not quite right about elective inductions or c-sections. Proponents argue that children should come in their own time, not on someone else’s schedule. And, as in the end-of-life debates, for religious people, there is just something that feels like God’s will about letting birth happen “naturally,” even if it’s messy or painful or inconvenient.
The debate about elective inductions and c-sections tends to swirl around the pragmatic question of whether they pose any risks to mother or child, just as the right-to-die debate tends to focus on issues like oversight and use-rates. But the philosophical issue at the heart of both debates is: Does human power threaten divine power? Is there a limit to what humans should be able to control? People are generally comfortable with hastening or intervening in other biological processes — pulling out baby teeth or installing a Pacemaker — but when it comes to birth and death, the issue seems to become more fraught.
Inevitably every woman in late pregnancy has to make certain decisions about how and when to have her baby (and there are some further interesting parallels between “birth plans” and living wills, and how both are often ignored or deemed irrelevant in the actual event,) but in this case all the options are legal.
And this is the nub of the right-to-die debate. You may believe that choosing to end your life under any circumstances is tantamount to an immoral or illegal suicide, or you may believe that the very value of your life is represented in your own choice to die peacefully. But should your own preference become law?
As Leon Kass acerbically noted during the Pew Forum discussion, anecdotes make bad policy. How can you create a law that gives everyone a chance to do what they think is right? If you’ve got a good answer to this one, please let the rest of us know — advice is needed.
Note: While ReligionWriter does contract work for the Pew Forum, including work related to the right-t0-die event transcript, the above posting represents only her views, and not the views of the Pew Forum.
Aug
1
Is the Abortion Debate Obsolete? Q+A with Liza Mundy
August 1, 2007 | 1 Comment
The complex ethical issues of assisted reproduction explored in reporter Liza Mundy’s new book, Everything Conceivable, (and reviewed earlier this week on this site) can make the abortion debate look outdated. ReligionWriter called up Mundy to discuss the new meanings of “reproductive choice,” the voice of religious leaders in answering these ethical questions, and what the U.S. can learn from the U.K. about encouraging public debate on reproductive technology.
ReligionWriter: What drew you to the topic of fertility medicine?
Liza Mundy: I came of age in the early 1980s, when reproductive rights was an almost defining ideological issue. The word “choice” really had one meaning: your position on what a woman could do with an unwanted pregnancy. I’ve written all my career about reproductive politics, including what turned out to be a controversial article about two deaf lesbian women seeking a deaf sperm donor, which introduced me to the field of bioethics. Then I wrote about how low-income people experience infertility in 2003 and learned how common infertility is and how hard people will work to have a child.
After that article I was having lunch with a reporter who was pregnant with IVF twins, and it was at that moment I realized the menu of reproductive choices had expanded enormously since I was in college. When you embark on infertility treatment, you face hard choices that scramble whatever preconceived notions you might had about the notion of choice.
RW: Do the questions raised by assisted reproduction make the abortion debate obsolete?
Mundy: I don’t think it will ever be obsolete in this country. In
RW: In your book, you suggest that some infertility doctors hide, in some sense, behind the mantle of “reproductive choice.”
Mundy: Of course there is a lot of variation among these doctors; some are very scrupulous, others less so. But yes, some have co-opted the concept of choice to justify making everything available, and leaving up to the patient important decisions like how many embryos to transfer [to the womb in an IVF cycle.]
RW: So what does the word “choice” mean now in the reproductive context?
Mundy: The concept is so widespread as to be meaningless. There was one moment during my reporting, when the director of a pro-life-oriented group called Snowflakes, which arranges embryo adoptions, talked about providing people with “as many choices as possible.” It was a beautiful example of how the pro-life and pro-choice positions become so intermingled on these issues.
RW: When you interviewed people who were facing hard choices — about whether to reduce a multiple pregnancy, for example, or a tell a child he or she was the result of gamete donation — did you find that many consulted with their religious traditions or leaders?
Mundy: I was at one fertility clinic, waiting to speak with a doctor, and I saw a woman, who was Catholic, cancel her appointment after talking with her priest, who advised her against being treated with fertility drugs. Of course the Catholic Church has more formal guidelines [on assisted reproduction technology] than most; they oppose IVF from the start as being unnatural and abrogating the realm of God.
I also talked to pastors who said in the course of their work people confide in them about the grief of experiencing lifelong infertility.
RW: In your book you talk with infertility doctors, patients, bioethicists and others who have thought deeply about the ethical issues of fertility medicine, but religious figures don’t appear much. Why is this? Are there no religious leaders up-to-date enough that they would have made an interesting interview?
Mundy: Yes, I would say so. I didn’t run across anyone who jumped out at me. A lot of official church bodies are being forced to grapple with reproductive technology now, most evidently in the area of stem cell research. They are trying to figure out how to think about the embryo, and some churches have weighed in.
RW: You describe how many couples are almost paralyzed by the question of what to do with their frozen embryos. If religious organizations all issued clear moral guidelines, would that help people make these tough decisions?
Mundy: People don’t always follow dictates of their church of course. The question is made more difficult because it’s so hard to donate embryos for research right now.
When patients go through this process, they become very attached to the embryos. It’s a very personal thing. So even if your church says it’s okay [to allow embryos to “lapse” or be donated for research or adoption,] that doesn’t necessarily mean it’s easy or it feels okay to you.
RW: Do you see a parallel here with descriptions of pro-life people who have, for whatever reason, found themselves seeking abortions? That personal experience can be so powerful as to override even religious belief?
Mundy: That’s right. What makes it so hard for people is that many if not all religions place a high value on family and family life. The Catholic Church might say IVF is wrong, but the church and the culture are simultaneously saying children are the greatest blessing. Those would be confusing messages to process.
I also talked to people who encountered religious prejudice. One woman used fertility drugs and conceived quadruplets, one of whom died and the other three of whom were disabled. She said sometimes when she went forth into her Texas community, people would say, “You got what you asked for in defying the will of God, because God intended you to be infertile.”
RW: Was there ever a moment in your reporting when you thought, “Maybe the Catholic Church is on to something in prohibiting IVF. Maybe we never should have let the genie out of the bottle?”
Mundy: No. What struck me most were the people who said, “No matter how hard it was, it was all worth it.” I don’t want to be Pollyanna-ish about it. There were certainly people, particularly with multiples, who said, “If I could go back and do it over again, I would do it differently.” But I do think it’s a good thing that three million children now exist who would not have existed if it were not for the science. I was trying to highlight the difficult choices, but I didn’t have the sensation that all of this is wrong or misguided.
RW: In one of your chapter titles, you call selective reduction the “best-kept secret” of reproductive technology. Why hasn’t the issue received more public attention?
Mundy: It’s not something people like to talk about it, if they’ve had a selective reduction. Unlike abortion, there are not strong advocacy groups mobilized on either side. The fertility industry really doesn’t want people knowing how often this occurs, and most of the doctors who perform it probably aren’t going to let a reporter spend time with them. But there is no shortage of medical literature about it. Just go onto Pub Med and type in “selective reduction” or “multi-fetal pregnancy reduction.”
RW: Does it strike you as odd how some fertility-related ethical issues — like partial-birth abortion for example — grab headlines, but other equally vexing issues — like selective reduction — don’t?
Mundy: It tends to come up when someone has, say, octuplets, or other high-order multiples, and it’s on the evening news. Sometimes the couple says, “We just couldn’t bring ourselves to do selective reduction.”
RW: Out of the many issues you discuss in the book, are there one or two you think are likely to become hot-button debates in the next few years?
Mundy: In this country, a lot of these debates are going to be carried out in state legislatures, because that’s where family law is made. Connecticut, for example, has voted for insurance coverage for IVF, and insurance companies can therefore limit the number of embryos transferred in IVF.
In the United Kingdom, there is a government agency to regulate assisted reproduction, and its decisions are often met with outcry and debate. You see assisted reproduction issues on the front pages of the newspapers there all the time. It’s just part of the public discourse. Whether or not people [in the U.K.] have been through fertility treatment themselves, everybody thinks they have a stake in these moral debates.
In the U.S. because [infertility treatment] is a private, profit-making branch of medicine, and it’s not regulated or funded in any high-profile way that would provoke an outcry, I don’t know whether the public discussion is ever going to crystallize. But something could always percolate up. Who knew that one of the first questions President Bush was going to have to deal with when he took office was federal funding for stem-cell research?
RW: So does the U.K. have it right?
Mundy: They have a more coherent policy than we do.
RW: Is that because they have a state-run health care system?
Mundy: After IVF first succeeded, in England, with the birth of Louise Brown, there were scientists who organized themselves and created charitable foundations to bring some coherence to the debate. They made a concerted effort to educate Members of Parliament, literally inviting them to look down microscopes at embryos. As one scientist told me, “That did a lot to persuade people that we weren’t making Frankensteins in the basement.” They made an effort to move the issue forward, and that doesn’t seem to have happened in this country.
Jul
30
If you’re looking for a summer-reading book that will both keep you up late at night turning pages and give you a shopping-list-long set of often-heartbreaking moral questions to ponder, then run don’t walk to get Liza Mundy’s recent book, Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World.
While reporters have covered aspects of the ethical dilemmas posed by assisted reproduction technology, such as parents struggling to decide what to do with unneeded frozen embryos, or some people’s discomfort with gay men become parents through surrogacy, or, of course, the question of women delaying childbearing, Mundy appears to be the first to pull together these disparate social trends and scientific advances to give a big-picture look. And as she pulls the camera back for the wide-angle view, Mundy reveals a host of bedeviling questions, which she deftly illustrates with portraits of the real people who are wrestling with them. Here’s a sample:
Are parents who have children using sperm or egg donors obliged to tell these children the truth of their conception and genetic history? If you say no, consider this story Mundy relates: A D.C.-area single mom uses a sperm donor to conceive twins, then finds out the woman across the street from her is also pregnant with twins — from the same donor! These sets of twins, who are genetic half-siblings, could be in the same class at the same school: Do they have a right to know that their potential friends or even, at some point, mates are in fact related to them?
On the flip side, Mundy describes the situation in the UK, where sentiment favoring children’s right-to-know runs high; anonymous sperm and egg donation is now prohibited. This law, however, has had the effect of drying up gamete donations — meaning, as Mundy puts it, some children won’t be born as a result — and pushing UK parents to seek anonymous donors in Eastern Europe. (And the word “donors” here belies the fact that in many countries, including the U.S., women can earn thousands of dollars for donating eggs.)
Should there be a limit on how many embryos fertility doctors transfer to a mother’s womb in the case of in-vitro fertilization (IVF)? If you feel like you don’t know enough about the topic to make an informed decision — well, that’s how many IVF-treatment parents feel when their doctor gives them five minutes to make the decision to implant one, two, three or more embryos.
The risk involved? A multiple pregnancy can seriously endanger the lives of not only the fetuses but the mother herself. Because would-be parents usually have to pay for expensive IVF cycles out of pocket, however, the pressure to transfer multiple embryos is intense. The result? A skyrocketing number of multiple births and a relatively new procedure known as “selective reduction,” in which a doctor ends the life of one or more fetuses to protect the lives of the remaining fetuses.
Mundy’s chapter on this topic, “Deleting Fetuses: Selective Reduction, ART’s best-kept secret,” is perhaps the most disturbing, as she follows several couples forced to choose between keeping all three or four fetuses — and running the risk of losing them all — or eliminating one or two of them. (A condensed version of this chapter also appeared recently in the Washington Post Magazine.) Mundy describes how one doctor decides which fetuses’ hearts will stop beating on the basis of their genetic health, position in the womb, or — gulp — sex.
It is a Sophie’s Choice nightmare to contemplate, especially when we read one parent’s comment that selective reduction is harder to deal with after the surviving fetuses/children have been born. Said one mother who had reduced her triplet pregnancy to twins: “You think: I could have ended up with one of these being gone, and the one that is gone could have been one of these.”
These are just several of the many dilemmas Mundy’s book raises, and while she offers no easy answers, she says the first step is clear: There needs to be a louder, more public debate on these complex moral issues. Her book is a perfect place to begin.
Coming Wednesday: ReligionWriter interviews Liza Mundy on whether the ethical questions of assisted reproduction technology make the abortion debate is obsolete, and how religious leaders are struggling to keep up.
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