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What do people at risk for Alzheimer disease think about surrogate consent for research?

From the Department of Psychiatry, Bioethics Program, and Center for Behavioral and Decision Sciences in Medicine, University of Michigan Medical School (Dr. S. Kim); Center for Statistical Consultation and Research and the Department of Biostatistics, University of Michigan School of Public Health (Dr Kim); Program in Neurobehavioral Therapeutics, Department of Psychiatry, University of Rochester Medical Center (Dr. Tariot and C. McCallum), Ann Arbor, MI.

Address correspondence and reprints requests to Scott Kim, MD, PhD, Bioethics Program, 300 North Ingalls Street, 7C27, Ann Arbor, MI 48109; e-mail:scottkim{at}umich.edu

Background: Research involving decisionally incapable adults remains an unsettled and controversial policy issue, especially for protocols that involve significant risk to participants. Few data exist to guide policymakers and IRBs

Objective: Survey the views of persons at heightened risk for dementia regarding the acceptability of surrogate consent for biomedical research of varying levels of risks and potential benefits.

Methods: Using a mail survey, the authors surveyed the participants at one of the sites of the Alzheimer’s Disease Anti-inflammatory Prevention Trial (all participants are 70 years old or older with at least one first-degree relative with dementia) and measured responses regarding the acceptability of surrogate consent for 10 research scenarios of varying degrees of risks and benefits (ranging from an observation study to a gene transfer protocol), given from the perspectives of social policy, personal preferences for self, and preferences when deciding on behalf of a loved one.

Results: Two hundred twenty-nine of 259 eligible participants responded (88%). A large majority (>90%) found minimal risk studies as well as randomized clinical trials of new medications acceptable for surrogate consent. A smaller majority found the more invasive studies acceptable. Participants were more cautious when deciding for a loved one. General attitude toward biomedical research and scenario-specific risk perception were strong independent predictors. Demographic and personal history variables had relatively little effect.

Conclusions: Laypersons at heightened risk of Alzheimer disease discriminate among research scenarios of varying risks and burdens. They are supportive of surrogate consent-based research even when the risks and burdens are significant to the subjects; these opinions appear to be based in part on their assessment of risks as well as on their general attitude toward biomedical research.

Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Contents for the November 8 issue to find the link for this article.

Supported in part by grant K23 MH64172 from the National Institutes of Health (S.Y.H.).

Disclosure: The authors report no conflicts of interest.

Received April 27, 2005. Accepted in final form July 29, 2005.

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