Disability, democracy, and the new genetics

Does it serve a democracy to prohibit or permit parents to engage in genetic selection? In this chapter, Michael Bérubé investigates the possibilities of not-too-distant technologies to select against genetic features and how our laws should restrict or allow certain reproductive practices. Bérubé provides a reading of the science-fiction film Gattaca in which he points out that the movie’s futuristic setting takes for granted that society would endorse genetic screening. In the film, detecting a genetic anomaly is self-evident justification for terminating an embryo. Bérubé argues against this assumption, but only as far as childbirth isn’t considered mandatory for such embryos either. Rather, he insists that it is more consistent with democratic principles to allow prospective parents to choose for themselves. Citing the work of Ruth Hubbard, this chapter explains the difficulties in maintaining an individual’s abortion rights while also fighting a social stigma against disabled people that shapes prenatal choices. Bérubé envisions a world in which rigorous debate focuses on screening certain conditions while also refusing to equate disability with disease or consider disabilities solely in the terms of cure or elimination. Democracy, he tells us, does not have to honor all personal preferences in order to honor individual autonomy in decision making. Although eugenicists have historically focused on larger populations, modern genetic screening can be understood as a “private” or individual version of the same principles. But taking a libertarian stance by making genetics a private choice doesn’t adequately account for any kind of social good. For disabled people, Bérubé claims, there is no realm of the wholly private because living with disability is always a matter for public policy. Disabled people must play a part in the democratic deliberation that shapes these policies.