When choice and diversity collide

DNATreeIt was just a week ago that we looked at New York Times reporter Amy Harmon's story on genetic testing of fetuses. She wrote that some parents of children with Down syndrome are lobbying other parents not to abort their children with Down syndrome. The story, which was very well done, left me hungry for more coverage of genetic testing issues. And Harmon delivered just a few days later. In another interesting story headlined "Genetic Testing + Abortion = ???," she looks at the unease in the abortion rights community over abortion of children with problems. In many ways, this is a story that only the Times could do. The whole premise of the piece is that some people are uncomfortable when the principle of a woman's choice to abort her child conflicts with disability rights.

One of the reasons that the abortion debate can seem so tiring is because so many people on either side are operating with different first principles. In logic and philosophy, first principles are those axioms that cannot be deduced from other principles. Many in the pro-life movement have the first principle that all humans -- born or unborn -- have the right to life. From this principle, others develop. It might be said that the first principle in the pro-choice movement is just that: choice. For pro-choicers, their guiding notion is that all mature women have the right to choose whether to abort their fetus. Add into that mix, of course, that most opinions on abortion aren't based on first principles but gut reactions, emotions, or other methods.

Into this fray falls Harmon's article, which begins with a pro-choice activist's decision to allow her child to live after finding out he or she had Down syndrome. She says she thought it would be morally wrong to abort a child for a genetic disability.

Abortion rights supporters -- who believe that a woman has the right to make decisions about her own body -- have had to grapple with the reality that the right to choose may well be used selectively to abort fetuses deemed genetically undesirable. And many are finding that, while they support a woman's right to have an abortion if she does not want to have a baby, they are less comfortable when abortion is used by women who don't want to have a particular baby.

"How much choice do you really want to give?" asked Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. "That's the challenge of prenatal testing to pro-choicers."

Harmon's contention that "many" abortion rights advocates are less comfortable with the actual abortion of a particular fetus rather than the right to kill any fetus for the reason that the mother doesn't want it is fascinating. The sole reason offered for this conflict is that abortion on demand goes against the interests of the disabled. But I would have liked a bit more explanation of why it's worse to kill a disabled fetus or chromosomally-different fetus than one whose abilities and chromosomes are unknown. She quotes Nancy Keenan, president of NARAL Pro-Choice America, as saying this very issue underscores the importance of the right to abortion.

Harmon explains that anti-abortion advocates have criticized the use of prenatal testing for eugenics. But, she says, the selective elimination of unborn children might bother solid abortion rights advocates. She speaks with one disabilities rights advocate who was upset to find out that groups like Planned Parenthood often lobby for exemptions for women who learn their child is disabled on legislative attempts to restrict abortion. Actually, Harmon says the exemptions are being requested on behalf of women who learn their child "would have" a disability.

I think this language and verb tense is interesting, in the same way that people ask me what sex my child will be. Of course sex is determined chromosomally, meaning that sex is given at conception. At least that's what I learned in high school. So mothers donate the X part and fathers donate either an X or Y chromosome. If a Y is present, you've got yourself a boy. If it's all Xs, you've got yourself a girl. My baby is, if our ultrasound technician was on her game, a girl. And that won't change in utero. In that same sense, is chromosomal disability something you "will have" or something you have at the beginning? It's just interesting what the language chosen means about the direction of the story. Harmon continues:

"You've got these two basic liberal values on a kind of collision course," said Rayna Rapp, an anthropologist at New York University who has studied attitudes toward prenatal testing.

The questions may only become murkier if testing extends to traits like homosexuality or intelligence.

But Kirsten Moore, president of the pro-choice Reproductive Health Technologies Project, said that when members of her staff recently discussed whether to recommend that any prenatal tests be banned, they found it impossible to draw a line -- even at sex selection, which almost all found morally repugnant. "We all had our own zones of discomfort but still couldn't quite bring ourselves to say, 'Here's the line, firm and clear' because that is the core of the pro-choice philosophy," she said. "You can never make that decision for someone else."

The rhetoric of "choice," however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. "It so buys into this consumer perspective on our children," said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, Calif., who is an abortion rights supporter.

Harmon says abortion rights advocates fear that a move on behalf of disabiltiies rights could provide an opening to limit abortion on demand. But she uses this concern to get back to the discussion of first principles. Here's how the article ends:

"The fear is that this will be used as an excuse to limit women's access to abortion," said Sujatha Jesudason, associate director of the Center for Genetics and Society, a nonprofit group promoting limits on reproductive technology. "But as these selective technologies are getting popularized we need to try to agree on a set of principles without giving up the fight for reproductive rights."

If that doesn't happen, some abortion rights supporters say they are worried that their opponents may hijack the discussion.

"Some religious conservatives say that they trust God to give them the child that is meant to be," wrote Ann Althouse, a law professor in Madison, Wis., who identifies herself as an abortion rights supporter on her legal blog. "But isn't there something equivalent for social liberals? Shouldn't they have moral standards about what reasons are acceptable for an abortion?"

Again, major kudos to Harmon for exploring the ethical issues surrounding genetic testing. It takes courage to wade into the abortion debates. And it takes much more courage and skill to engage philosophy, ethics and politics in one fell swoop. Harmon managed the task well and was very thorough and fair to the various pro-choice viewpoints engaged in debate.

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