Lethal autonomy: the malfunction of the informed consent mechanism within the context of prenatal diagnosis of genetic variants.
In this article, Cara Dunne and Catherine Warren challenge the current role of genetic counselors in advising expectant mothers about potential genetic defects of their fetuses. They show that genetic counselors sometimes provide one-sided negative information to women undergoing prenatal diagnosis of genetic variants. This biased information promotes abortion of what are considered "defective" fetuses. The misleading information provided by the genetic counselors and the termination of the pregnancies is akin to the eugenics movement. The authors describe the early 20th century eugenics movement, explore the origin and development of the Human Genome Project, analyze the current role of genetic counseling, and explain the importance of the informed consent process to the exercise of autonomy. Dunne and Warren conclude by offering methods by which to restructure the informed consent mechanism to offer a more balanced assessment of the risks and benefits associated with genetic disability.
Dunne
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New England Retinoblastoma Family Foundation, Watertown, MA, USA.
Warren
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D000025:Abortion, Eugenic / Q000523:psychology / Q000592:standards; D001294:Attitude to Health; D003657:Decision Making; D030881:Disclosure; D004992:Ethics, Medical; D005053:Eugenics / Q000266:history / Q000379:methods / Q000639:trends; D005260:Female; D005817:Genetic Counseling / Q000592:standards*; D030342:Genetic Diseases, Inborn / Q000517:prevention & control / Q000523:psychology; D049673:History, 20th Century; D016045:Human Genome Project; D006801:Humans; D007258:Informed Consent; D028683:National Socialism; D026684:Personal Autonomy; D011247:Pregnancy; D011369:Professional-Patient Relations; D014481:United States