Information and Eugenics?

George Will writes about genetic testing in Newsweek – his concern is that the recommendation by the American College of Obstetricians and Gynecologists that all pregnant women be tested for Down syndrome will lead women to abort babies with the syndrome. According to Will, “diagnosing Down syndrome can have only the purpose of enabling—and, in a clinically neutral way, of encouraging—parents to choose to reject people like [the subject of his article] as unworthy of life.” (“Unworthy of life” has disturbing implications, probably intentional, for those of us who have studied the bio-medical language used to justify the genocide against Jews by the Nazis.)

Will doesn’t seem to oppose genetic testing generally; he doesn’t want to provide pregnant women with certain information (or, perhaps, opposes mandating its provision) because he is concerned about their behavior in response to it. Information control, then, is a second-order move: banning abortion is currently impermissible constitutionally, and convincing women to carry babies with Down to term is evidently an unsuccessful proposition. (Will states that 85% of pregnancies where the fetus is diagnosed with Down syndrome end in abortion.)

Some might object to Will’s position either because of his conservative politics or because of concerns about limiting choice. There are parallel situations that would likely worry liberals, too, though. India regulates genetic testing (Word document) due to concerns that parents will abort female fetuses.

There are three problems with this approach. First, censorship is clearly a second-best (if that) solution. Changing the underlying behavior is preferable; Will’s sensitive treatment of Jon, a person with Down syndrome, may be helpful in this regard. Second, banning information works like banning narcotics: it shifts from a legal to a black market for information, increasing both its cost and its risk. If we took the strong version of Will’s position and banned the Down test, we could safely anticipate that wealthy expecting parents could pay the risk premium to get the test, while less well-off pregnant women could not. This would lead to the counterintuitive, and likely undesired, result that children with Down syndrome would be more likely to be born to families with fewer resources to help meet their particular needs. Again, altering the underlying bias against children with Down syndrome is a better approach.

Finally, in a legal regime where abortion is lawful, access to information poses hard questions. Should we ban genetic tests for Tay-Sachs Disease? What about neural tube defects? The question is what alterations from standard fetal health should be diagnosed, and which ones society views as proper grounds for termination of a pregnancy. If we know that 85% of parents would abort a fetus with a given condition, how should we treat a test that provides them with information about whether their baby has that condition?

Regulating information is often easier or cheaper than regulating conduct, but it has a number of flaws: it favors those who can buy their way around barriers, and it avoids hard questions about the underlying behavior that is undesirable (the information, after all, is formally neutral). I’m worried that Will is taking the easy way out.

6 Responses to “Information and Eugenics?”

  1. Fascinating post, Derek! Info/law issues are indeed everywhere.

    I think it is worth elaborating a little further on the subtle distinction between mandating the testing and mandating (as the ACOG recommendation would do) that parents be informed about the availability of the testing and then given a choice whether they want to know that kind of information before their child is born. My wife and I chose not to have the Down’s Syndrome test when she was pregnant; thankfully, our daughter is healthy. George Will presumably would have made the same choice, and he loves his son who has Down’s Syndrome very much. It supports autonomy to give the patients the choice of how much knowledge they want, rather than leaving it to doctors.

    And by the way, there is another powerful reason that some parents might choose to have the test and gain the advance knowledge, other than Mr. Will’s prediction that they will have an abortion. Parents may want to know in advance in order to prepare themselves for the enormous challenges of caring for a disabled child, and to absorb the news so that, by the time their baby is born, he or she can be welcomed with joy.

  2. Thanks, Bill and Larisa! Bill makes two excellent points. First, being informed that the testing is available is quite different from having to be tested. Of course, the scope of available information may still shift behavior (see the literature on how available choices changes what we choose), but this is an important distinction. Second, knowing that one will have a baby with additional needs is quite important. This is linked to, but distinct from, how we think about those needs in themselves. (Will’s point about the stigma attached to Down syndrome is relevant here, but doesn’t exhaust the issue.)

    Larisa picks up on a complex debate that I’ve looked at only briefly – take, for example, questions about whether a woman would / should want to know if she carries BrCA2, the gene that makes it more than 80% likely she’ll have breast cancer at some point. This is obviously a painful and difficult choice either way. I think this links to Bill’s point, as simply the knowledge that this test is available will alter a woman’s approach and, probably, her mental state. It’s a very different world where breast cancer is a “lightning strike” about which one has little information or control, versus one in which you can determine with some confidence your risk.

  3. My concern is somewhat similar to William McGeveran’s and somewhat different. My opinion is simply that this is a private matter and should in no way be a political or public issue. Abortion and genetic testing, in my opinion, are a personal, not political question and therefore do not belong in the public arena in any capacity other than for theoretical debate. What I do with my body is not the business of the government. The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue. Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.

  4. Will’s column doesn’t trouble me for its anti-genetic screening point of view, to which I believe he is fully entitled. However his intellectual dishonesty in the use of highly charged language and manipulative framing of the question(s) hardly lends itself to a straightforward furtherance of the debate. Implied in Mr. Will’s opening salvo is the idea that obstetricians have an interest in somehow persuading pregnant couples to choose to abort genetically abnormal fetuses, when nothing could be further from the truth. Indeed it precisely because doctors would prefer that couples make these decisions for themselves – without the “what you do you recommend?” agonizing-over-the-odds-questions – that they are interested in providing their patients with all the available relevant information. Furthermore, insofar as obstetricians are close to the “front lines” of the couples’ anxieties over the risks to their pregnancies, they are exquisitely aware of the ultimately calming effects of these tests (which is, let us not forget, what the vast majority of screens and diagnostic tests provide). Happily after all, most babies are born genetically normal.

    Unspoken by Mr. Will is his hardly-secret agenda that abortion shouldn’t be an option in the first place, except under the most extreme circumstances. Thus his concern is very likely that early genetic testing may create philosophical allies for the pro-choice crowd, a result he is eager to prevent. I am of the opinion that this “failure to disclose” on his part lessens his credibility with respect to the subject.

    Equally problematic, is the obfuscation of a certain amount of self-interest that any parent of a Downs child could reasonably be expected to feel, if not to voice overtly. Namely, if it is correct that some 85% of pregnant couples are choosing to abort genetically abnormal fetuses, then the social commitment to a safety-net for those afflicted may possibly be anticipated to erode over time as those individuals decrease in their representation in the general population. However, before we get excited by the canard of Nazi-style eugenics, it bears repeating – over and over and over again – that the difference between the state telling you that you must abort and making that decision for yourself based on your knowledge of your own limits, is profound.

  5. Good reply William. The additional time that this type of testing allows parents can be invaluable for preparing the parents for the challenges ahead of them.

  6. What I do with my body is not the business of the government. The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue. Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.