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The Value of Non-Domination in Supported Decision-Making for Research Participation for Individuals with Intellectual
Dana Howard1, Allison M McCarthy2
1Department of Biomedical Education and Anatomy, Center for Bioethics, https://ror.org/00c01js51The Ohio State University Wexner Medical Center, Columbus, United States.
Abstract:
This paper argues that research ethics for individuals with intellectual and developmental disabilities must attend to the value of non-domination. First, we highlight the role of domination in the history of abusive research practices against individuals with intellectual and developmental disabilities, practices which directly led to existing protections for this vulnerable population. Second, we argue that existing protections do not adequately safeguard potential participants from domination in decision-making about whether to participate. This is a distinct concern from the well-established criticisms that existing protections may wrongfully exclude potential participants. Finally, we outline and defend an account of supported decision-making grounded in the value of non-domination in order to safeguard potential participants from domination. Our account nonetheless preserves supported decision-making's possibilities for greater inclusion of individuals with intellectual and developmental disabilities in research participation.
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