Michael Bérubé, full-time Professor of Dangeral Studies and weekend blogger at Pandagon, has both a post and an article (in the Toronto Globe & Mail) about prenatal testing and some of the ethical issues it raises, in particular where the results are a factor in deciding whether to abort a fetus.
As you may know, Michael is the father of a son, Jamie, who has Down syndrome. He’s written quite extensively about Jamie, both at his now-giant nuclear fireballed blog and in a 1996 book. When Michael’s wife Janet was pregnant with Jamie in 1991 at the age of 36, the doctor suggested amniocentesis “just to make sure.” They decided against the procedure for a variety of reasons, among them that the risk of miscarriage was about the same as the risk of Down syndrome. Another was that the results would not be available until 16 to 18 weeks into the pregnancy, later than they were comfortable with for making a decision about termination, though any severe, life-threatening anomaly such as anencephaly, would be visible on the sonogram much sooner.
I didn’t think it was worth it to screen for Down syndrome when Janet was pregnant in 1991. And back then I didn’t have any idea that our “disabled” child would go on to learn elementary French or the characteristics of 40 different species of sharks. I didn’t dream that he’d be such a capable swimmer and basketball player, or such an enthusiastic fan of Harry Potter.
Now that I know what Jamie is like, I’ve come to the conclusion that our fear of mental retardation is out of all proportion to the phenomenon itself, and that millions of “developmentally delayed” people can live happy and fulfilling lives — far happier and more fulfilling than most of us “normal” and “gifted” folk have been able to imagine.
Both the post and the article are a thoughtful consideration of the issues surrounding disability, prenatal testing, and abortion. Tests for Down syndrome are now less risky and show results a lot sooner than amnio. But Michael questions whether it’s appropriate to run prenatal tests for every abnormality that can now be detected when we don’t even know what “normal” really is. Certainly, he argues, when painful and life-threatening genetic disorders such as Tay-Sachs disease can be eradicated through prenatal testing and abortion, that is an unqualified good. But what of Down syndrome? Or deafness? Or autism? These are all disorders that carry a lot of fear, a lot of difference, a lot of heartache. But is eradicating them the same kind of unqualified good that eradicating Tay-Sachs is?
Here’s where the picture gets complicated. Michael argues against limitations on prenatal testing, even as he cautions against overreliance on them:
The debate about prenatal screening has managed, remarkably, to obscure two critical things: We have no idea what we mean when we talk about “screening,” and we have no idea what we mean when we think about “unqualified good for the species as a whole.” And yet as the technology of prenatal screening improves with each year, we tell ourselves we’re getting somewhere. How can that be?
Perhaps it’s that we live in a world where an ounce of prevention is rightly considered to be better than a lifetime of symptomatic treatment — but where the logic of “prevention” is wrongly mapped onto pregnancy and childbirth, so that it perversely seems (to some people) as if it’s always better to prevent some lives than to live them.
Or perhaps it’s that we don’t stop to consider all the things we can’t see when we “screen” pregnancies. Things such as cerebral palsy or some forms of autism or schizophrenia or, my favourite term, “pervasive developmental delay” — a formal way of saying “we have no idea what’s going on in there.” Some advocates of across-the-board prenatal screening seem to be especially confused about what the technology can and can’t do.
Or perhaps it’s that we don’t yet know how to distinguish disability from disease, ordinary fleshly frailty from relentless predatory illness.
And then there’s the added complexity of the right of the mother to control of her body and of the parents to decide what they can handle:
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.
MDs in Canada have recently recommended that all pregnant women be screened for Down syndrome; Michael remains skeptical of the utility of doing so, in part because it treats Down syndrome as something that should qualify a fetus for an automatic termination. But because he supports choice, and he trusts women, he disagrees strongly with those, like George Will, who believe that women do not have the right to make difficult decisions about their lives based on prenatal testing:
Occasionally, I run into parents of children with Down syndrome who are quite certain that no one should ever be able to make prenatal decisions with which they themselves would disagree. In the United States, for instance, conservative pundit George Will has recently written that the legalization of abortion, combined with prenatal screening, has led society on “search-and-destroy missions” meant to rid the world of people like his son 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.”
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.
Occasionally, we get an anti-choice troll here who tries to catch us in an inconsistency by demanding to know if we support choice if it means that people will be aborting female fetuses (as is frequently the case in India or China), or if there were some kind of prenatal testing for homosexuality. Indeed, Michael’s post at Pandagon attracted one of these types. We also get people who are disability advocates who are understandably freaked out about the idea that the disabilities they live with are considered such a burden to prospective parents that the parents opt to terminate the pregnancy rather than raise a child with a disability.
Let me state for the record that I support abortion at any time up to viability for any reason whatsoever, from birth defects so serious that the child will be dead moments after birth to wanting a child of a different sex to not wanting to raise a child with Down syndrome to wanting to fit into a prom dress.
Why? Because I trust women. I trust them to know what’s right for their own lives.
However, that’s not to say that I can’t also believe that 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.