Surrogate Consent for Dementia Research: A National Survey of Older Americans

Neurology, 2009

8 Pages Posted: 20 Nov 2015

See all articles by Scott Y. Kim

Scott Y. Kim

National Institutes of Health; University of Michigan at Ann Arbor

Hyungjin Myra Kim

University of Michigan at Ann Arbor

Kenneth Langa

University of Michigan at Ann Arbor

Jason Karlawish

University of Pennsylvania

David Knopman

Johns Hopkins University

Paul S. Appelbaum

Columbia University

Date Written: 2009

Abstract

Research in novel therapies for Alzheimer disease (AD) relies on persons with AD as research subjects. Because AD impairs decisional capacity, informed consent often must come from surrogates, usually close family members. But policies for surrogate consent for research remain unsettled after decades of debate. We designed a survey module for a random subsample (n = 1,515) of the 2006 wave of the Health and Retirement Study, a biennial survey of a nationally representative sample of Americans aged 51 and older. The participants answered questions regarding one of four randomly assigned surrogate-based research (SBR) scenarios: lumbar puncture study, drug randomized control study, vaccine study, and gene transfer study. Each participant answered three questions: whether our society should allow family surrogate consent, whether one would want to participate in the research, and whether one would allow one's surrogate some or complete leeway to override stated personal preferences. Most respondents stated that our society should allow family surrogate consent for SBR (67.5% to 82.5%, depending on the scenario) and would themselves want to participate in SBR (57.4% to 79.7%). Most would also grant some or complete leeway to their surrogates (54.8% to 66.8%), but this was true mainly of those willing to participate. There was a trend toward lower willingness to participate in SBR among those from ethnic or racial minority groups. Family surrogate consent-based dementia research is broadly supported by older Americans. Willingness to allow leeway to future surrogates needs to be studied further for its ethical significance for surrogate-based research policy.

Suggested Citation

Kim, Scott Y. and Kim, Hyungjin Myra and Langa, Kenneth and Karlawish, Jason and Knopman, David and Appelbaum, Paul S., Surrogate Consent for Dementia Research: A National Survey of Older Americans (2009). Neurology, 2009. Available at SSRN: https://ssrn.com/abstract=2692697

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

Hyungjin Myra Kim

University of Michigan at Ann Arbor ( email )

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

Kenneth Langa

University of Michigan at Ann Arbor ( email )

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

Jason Karlawish

University of Pennsylvania ( email )

Philadelphia, PA 19104
United States

David Knopman

Johns Hopkins University ( email )

Baltimore, MD 20036-1984
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)

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