Just prenatal testing? The science, ethics, and policy of testing for Down syndrome

Prenatal testing for Down syndrome (DS) has been available for over forty years. With the development of screening technologies, testing is now offered to all pregnant women. But is the increasing use of these tests really a good thing? Is a test for DS just another test; or is it another form of disability prevention, one with unsettling and discriminatory overtones? In this thesis I argue that whether testing is permissible or not is dependent in part on the morality of abortion. After an examination of arguments regarding fetal viability, sentience, and potential, I conclude that a fetus with DS may have less right to life than a fetus without DS, but this is dependent upon one’s perception of what constitutes ‘the good life’. That raising a child with DS may result in significant disruption to parents’ lives is an additional factor to take into account. If we hold that an abortion for social reasons is an acceptable expression of reproductive autonomy, then abortion for DS should be viewed as a morally permissible act. While prenatal testing for congenital conditions is distinct from many routine pregnancy tests, it does not follow that testing for DS should be restricted. It is conceded that prenatal testing may offend some people with DS (and their families), on the ground that DS may have considerable bearing on the development of one’s identity. But while some people take offence at the prospect of testing and abortion, it is not clear that they should; for the decision to terminate a pregnancy is a complex one, based upon many different factors. As new technologies become available, it is likely that more women will choose prenatal tests. More testing may mean that the numbers of those with DS will fall. However, this possibility should not preclude women access to testing. Pregnant women do not have a responsibility to ensure the continued prevalence of any trait or disorder, and DS is no exception. The treatment of people with disabilities has improved over recent decades, and this is something one would expect to continue. Though the number of people with DS may fall, there is increasing likelihood that social support will be more comprehensive than in the past. Ensuring that this occurs is of utmost importance. By using the controversial case of testing for DS, important issues surrounding all forms of testing in pregnancy come to light. This thesis concludes that two criteria must be met for a condition to be suitable for prenatal testing: that the condition significantly disrupts parents’ lives, and that the condition significantly limits a child’s open future. Although the existing framework may need improvement, the current practice of prenatal testing enhances reproductive autonomy. It provides information on one’s pregnancy which many women find important, and enables decision-making which is otherwise unavailable. Though not without its challenges, prenatal testing for DS is morally defensible, and should continue