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.