Reforming Informed Consent: On Disability and Genetic Counseling

In Michael J. Deem, Emily Farrow & Robin Grubs (eds.), The Oxford Handbook of Genetic Counseling. Oxford University Press USA (2023)
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Abstract

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist.

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Joel Michael Reynolds
Georgetown University

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References found in this work

The birth of bioethics.Albert R. Jonsen - 1998 - New York: Oxford University Press.
How to Be an Antiracist.Ibram X. Kendi - 2019 - The Bodley Head Press.
Implicit bias.Michael Brownstein - 2017 - Stanford Encyclopedia of Philosophy.
Preferring a Genetically-Related Child.Tina Rulli - 2016 - Journal of Moral Philosophy 13 (6):669-698.
Preferring a Genetically-Related Child.Tina Rulli - 2016 - New Content is Available for Journal of Moral Philosophy 13 (6):669-698.

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