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Accepted Paper:
Differing understandings of informed consent held by research institutions, people with cognitive impairments, and guardians: implications for inclusive, ethical research
Britteny Howell
(University of Alaska Anchorage)
Karrie Shogren
(University of Kansas)
This paper presents an ethical and inclusive framework for including people with cognitive impairments in research, called Supported Decision-Making.
Paper long abstract:
Increasing participation of people with cognitive impairment is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with cognitive impairment have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with cognitive impairment, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with cognitive impairment or their guardians. This paper reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with cognitive impairment that may unnecessarily limit the participation of people in research. The research literature on these barriers is summarized along with the authors’ own experiences with an alternative participatory strategy called Supported Decision-Making that has the potential to increase both self-determination and participation in research for people with cognitive impairment.