Deliberative Assessment of Surrogate Consent for Dementia Research: Views of Caregivers

Alzheimer's and Dementia, 2010

9 Pages Posted: 21 Nov 2015

See all articles by Scott Y. Kim

Scott Y. Kim

National Institutes of Health; University of Michigan at Ann Arbor

Rebecca Uhlmann

University of Tennessee, Memphis - Health Science Center

Paul S. Appelbaum

Columbia University

David Knopman

Johns Hopkins University

Hyungjin Myra Kim

University of Michigan at Ann Arbor

Laura Damschroder

Department of Veterans Affairs (VA)

Elizabeth Beattie

Queensland University of Technology

Laura Struble

University of Michigan at Ann Arbor

Raymond De Vries

University of Michigan at Ann Arbor - Medical School

Date Written: 2010

Abstract

Research involving incapacitated persons with dementia entails complex scientific, legal, and ethical issues, making traditional surveys of layperson views on the ethics of such research challenging. We therefore assessed the impact of democratic deliberation (DD), involving balanced, detailed education and peer deliberation, on the views of those responsible for persons with dementia. One hundred and seventy-eight community-recruited caregivers or primary decision-makers for persons with dementia were randomly assigned to either an all-day DD session group or a control group. Educational materials used for the DD session were vetted for balance and accuracy by an interdisciplinary advisory panel. We assessed the acceptability of family-surrogate consent for dementia research ("surrogate-based research") from a societal policy perspective as well as from the more personal perspectives of deciding for a loved one or for oneself (surrogate and self-perspectives), assessed at baseline, immediately post-DD session, and 1 month after DD date, for four research scenarios of varying risk-benefit profiles. At baseline, a majority in both the DD and control groups supported a policy of family consent for dementia research in all research scenarios. The support for a policy of family consent for surrogate-based research increased in the DD group, but not in the control group. The change in the DD group was maintained 1 month later. In the DD group, there were transient changes in attitudes from surrogate or self-perspectives. In the control group, there were no changes from baseline in attitude toward surrogate consent from any perspective. Intensive, balanced, and accurate education, along with peer deliberation provided by democratic deliberation, led to a sustained increase in support for a societal policy of family consent in dementia research among those responsible for dementia patients.

Suggested Citation

Kim, Scott Y. and Uhlmann, Rebecca and Appelbaum, Paul S. and Knopman, David and Kim, Hyungjin Myra and Damschroder, Laura and Beattie, Elizabeth and Struble, Laura and De Vries, Raymond, Deliberative Assessment of Surrogate Consent for Dementia Research: Views of Caregivers (2010). Alzheimer's and Dementia, 2010. Available at SSRN: https://ssrn.com/abstract=2693227

Scott Y. Kim (Contact Author)

National Institutes of Health ( email )

Warren G. Magnuson Clinical Center
Bethesda, MD 20895-1156
United States

University of Michigan at Ann Arbor ( email )

500 S. State Street
Ann Arbor, MI 48109
United States

Rebecca Uhlmann

University of Tennessee, Memphis - Health Science Center ( email )

Memphis, TN
United States

Paul S. Appelbaum

Columbia University ( email )

NY State Psychiatric Institute
1051 Riverside Drive Unit 122
New York, NY 10032
United States
646-774-8630 (Phone)
646-774-8633 (Fax)

David Knopman

Johns Hopkins University ( email )

Baltimore, MD 20036-1984
United States

Hyungjin Myra Kim

University of Michigan at Ann Arbor ( email )

110 Tappan Hall
855 S. University Ave
Ann Arbor, MI 48109
United States

Laura Damschroder

Department of Veterans Affairs (VA) ( email )

Washington, DC
United States

Elizabeth Beattie

Queensland University of Technology ( email )

2 George Street
Brisbane, Queensland 4000
Australia

Laura Struble

University of Michigan at Ann Arbor ( email )

110 Tappan Hall
855 S. University Ave
Ann Arbor, MI 48109
United States

Raymond De Vries

University of Michigan at Ann Arbor - Medical School ( email )

Ann Arbor, MI
United States

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