HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Monday, March 12, 2007

Genetic Testing

Professor Michael Berube has an excellent post on genetic testing at  He writes,

Anyway, just in case you didn’t already know, I happen to have a 15-year-old son with Down syndrome. His name is Jamie, and he rocks. My wife Janet and I didn’t opt for an amniocentesis back in 1991, for reasons I explain in the Globe and Mail piece (and more fully in this book). But in more recent years, tests have been developed which can detect Down syndrome as early as the eighth week of pregnancy, using nothing more invasive than a blood test. So if, like me, you support women’s reproductive rights, and the rights of prospective parents to obtain the medical information they think they might need, and yet you don’t necessarily want people to think of Down syndrome as an automatic reason for terminating a pregnancy, you have to come up with some delicate arguments; you can’t just go around saying that people with Down syndrome are Heaven’s little angels, sent down to us to make us all be nicer to each other, and you better not go around saying that God never gives people things they can’t handle. (Because, you know, He actually does that all the time. He’s really kinda mean that way.) At the same time, you know full well that even the most delicate argument won’t persuade people who think that having a child with Down syndrome is way, way more than they can handle. Those people aren’t necessarily blinkered or selfish, either. As one of Rapp’s interviewees puts it, “If I had this baby at 44, and it had Down’s, who would inherit it?” This is not a trivial question. Jamie was born when I was ten days shy of my thirtieth birthday, and I think about it approximately every day. . . . .

He then writes about a new initiative to expand screening for Down syndrome to all pregnant women.  He states,

. . . . This kind of initiative, I suggest, starts from the presumption that (all else being, cough cough, equal) we’d be generally better off if we could “catch” Down syndrome in utero and prevent people with Down syndrome from being born. As you’ll see if you read my article, I ain’t buying it, because I don’t see the potential eradication of Down syndrome from the species as being analogous to the potential eradication of smallpox or cholera. But I also ain’t buying George Will’s recent response to the new guidelines of the American College of Obstetricians and Gynecologists, which recommend screening for all pregnant women. Because it’s one thing to be skeptical of the idea that screening should be mandatory, and opposed to the idea that screening should be a prelude to abortion; it’s quite another to insist, as Will does, that pregnant women do not have the moral right to make difficult decisions about their pregnancies:

Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.

In my Globe and Mail essay, I respond like so:

Perhaps. And perhaps the world would be a sweeter place if we acknowledged that prospective parents who choose not to bring pregnancies to term are actually making difficult moral decisions rather than engaging in “moral regression.” That way, we could try to persuade people not to abort fetuses with Down syndrome — or any other disability — rather than coercing them into mandatory childbirth regardless of the circumstances.

Now, I suppose it’s all right for George Will to speak of the “moral regression” involved in “the casual destruction of pre-born babies,” because, of course, Will has long advocated universal health care in the United States on the grounds that our current employer-provider system is devastating to people with disabilities, who have an unemployment rate somewhere around 60 or 70 percent. Believing that childbirth is mandatory regardless of the circumstances of the mother or the fetus, Will argues, entails the obligation to provide strong programs of public assistance for the people who are brought into the world as a result.

Ha ha! Just kidding. George Will emphatically opposes universal health care. In that regard, he’s just one of those compassionate conservatives whose concern for the pre-born manages to outweigh concerns for the well-being of the post-born. By contrast, Rayna Rapp argues for a pair of principles that we might very well call “family values”:

The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. The second is the need to support adequate, nonstigmatizing, integrative services for all the children, including disabled children, that women bear. has a further interesting and informative discussion of his piece, which concludes:

. . . . we, as a society, need to change the conditions that lead to abortions in the first place. And that means comprehensive sex ed, it means contraception, it means emergency contraception. But it also means strengthening the social safety net so that women of limited means can afford to have a child, and it means changing the way that we as a society think about the disabled and the different (and, in the case of widespread sex-selective abortions, about the value of women and girls). When people are confronted with the news that the child they’re expecting will be born with a disability, it can make all the difference in the world if they know that they will have resources available to help them, not just when the child is young and in school, but long after the parents have left this earth.

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