Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability
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ORIGINAL RESEARCH
Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability James B. Gould
Received: 23 September 2019 / Accepted: 21 May 2020 # Journal of Bioethical Inquiry Pty Ltd. 2020
Abstract In this paper I argue that selective abortion for disability often involves inadequate counselling on the part of reproductive medicine professionals who advise prospective parents. I claim that prenatal disability clinicians often fail in intellectual duty—they are culpably ignorant about intellectual disability (or do not disclose known facts to parents). First, I explain why a standard motivation for selective abortion is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpable ignorance as the best explanation of inadequate disability counselling. Fifth, I rebut alternative explanations. My focus is pregnancies diagnosed with mild or moderate intellectual disability. Keywords Culpable ignorance . Epistemic virtue . Genetic counselling . Intellectual disability . Selective abortion
When Martha and John learned that their unborn son had Down’s syndrome, they chose to continue the pregnancy despite “prejudice of the . . . medical community” against intellectual disability (ID). At one point her obstetrician advised, “I think it’s time to let us take care J. B. Gould (*) Department of Philosophy, McHenry County College, 8900 Rt. 14, Crystal Lake, IL 60110, USA e-mail: [email protected]
of it for you.” Martha refused—the doctor persisted— Martha held her ground. But, she says, “it is difficult to convey the fear and despair I felt as the weight of [his] disapproval bore down on me.” This physician was not alone: “most . . . of the doctors I would interact with [during] my pregnancy disagreed with my decision [and] considered it wiser to do away with the baby” (Beck 1999, 218–223). Martha’s story, while anecdotal and older evidence of medical attitudes to ID, is neither unique nor dated. Hyunkyung Choi et al.’ 2012 metaanalysis finds that many healthcare professionals who advise couples following prenatal diagnosis of Down’s syndrome lack the expertise needed to provide appropriate counselling. In Briana Nelson Goff’s 2013 research, a majority of parents report negative experiences with clinicians who insist on terminating the pregnancy and perpetuate negative stereotypes of people with ID. Stephanie Meredith’s 2016 study confirms that physicians who work with pregnant women are often not sufficiently trained to advise them regarding selective abortion (SA). Call this the problem of inadequate disability counselling. The concerns are that clinicians are unaware of relevant information regarding ID (or if aware, do not share it properly with parents). Today most pregnancies are screened for genetic and chromosomal disorders. When tests are positive for conditions like Down’s syndrome, most parents terminate. (I discuss selective abortion—but disabilit
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