Research Involving Participants with Cognitive Disability and Differences
|Image courtesy of Oxford University Press
As human beings, we are all different yet part of one humanity. How we deal with differences between ourselves, however, is complex and is embedded in cultural and historical context including such as varying recognition of the value of diversity. Accordingly, cognitive disability and difference are of fundamental importance for the field of ethics.
|Image courtesy of Wikimedia Commons
The volume is organized into four sections. Section I presents conceptual frameworks addressing concepts of cognitive vulnerability, legal perspectives on decision-making for participants with impaired cognition, differing understandings of informed consent, “errors” in consent made by participants with and without cognitive disability, and perspectives on autism, autonomy, and research. Section II presents chapters addressing challenges to including participants with cognitive disability and difference in research – both as participants and as researchers. Many, though not all, of the chapters in this section focus on negotiations with research ethics committees and related authoritative bodies. Section III builds on these challenges but focuses on stories of successful inclusion. Researchers detail their studies involving diverse participants, engaging participant/stakeholder groups in reflections about research and research ethics itself, and working with research assistants who share a diagnosis with the target participant group. The book ends with several commentaries from these and other scholars, putting some chapters in conversation, extending the dialogue to other cases, and proposing directions for the future.
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Cascio, A. & Racine, E. (2019). Research Involving Participants with Cognitive Disability and Differences. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2019/10/research-involving-participants-with.html