'Backdoor to Eugenics'? The Risks of Prenatal Diagnosis for Poor, Black Women
24 Pages Posted: 19 Mar 2018
Date Written: 2015
This article is situated at the intersection of three of the conference’s stated subject areas: Race and Healthcare, Reproductive Rights, and Race and the Family. My recent research has focused on the manner in which pregnant women who learn of fetal genetic abnormalities prenatally receive counseling as they decide whether to terminate or bring their fetuses to term. The decision whether to terminate on genetic grounds is particularly vexing because it often turns on speculative medical information, and it can result in elevated rates of grief, depression, and post-traumatic stress. Though the prenatal genetic counseling offered to expectant women learning of a fetal abnormality exists ostensibly to provide them with objective information rather than to encourage or discourage pregnancy terminations, the reality is that such counseling is often coercive in the direction of aborting genetic anomalous fetuses. Because genetic counseling tends to consider family factors such as wealth and perceived preparedness to raise a child with a persistent medical condition or disability — and because the vast majority of genetic counselors are highly educated white women — the pro-termination norms of prenatal genetic counseling disproportionately impact nonwhite, non-affluent pregnancies. This observation is consistent with prior state and private practices aimed at controlling black reproduction. Because the detection of prenatal genetic abnormalities will soon rise sharply due to advances in technology and increased access to prenatal genetic analysis under the Patent Protection and Affordable Care Act, far more poor, black pregnant women will receive genetic counseling that will make them more likely to abort their fetuses in future years. This article describes the scale and scope of this potentially far reaching problem and offers suggestions for how to eliminate racial and class bias in prenatal genetic counseling.
Keywords: genetic counseling, Patient Protection and Affordable Care Act, Race, fetal genetic abnormalities,
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