| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|
|
|
|||||||
|
|||||||||
AUTHORS’ AFFILIATIONS
From the Center for Behavioral and Decision Sciences in Medicine, Bioethics Program, and Department of Psychiatry (S.Y.H.K.), Center for Statistical Consultation and Research (H.M.K.), and Division of General Medicine, Department of Medicine, and Institute for Social Research (K.M.L.), University of Michigan, Ann Arbor; Veterans Affairs Center for Practice Management and Outcomes Research (K.M.L.), Ann Arbor, MI; Department of Medicine (J.H.T.K.), Division of Geriatrics, Alzheimer’s Disease Center, Center for Bioethics, and the Leonard Davis Institute for Health Economics, University of Pennsylvania; Department of Neurology (D.S.K.), Mayo Clinic, Rochester, MN; and Division of Law, Ethics, and Psychiatry (P.S.A.), Department of Psychiatry, Columbia University and New York State Psychiatric Institute, New York, NY.
Address correspondence and reprint requests to Dr. Scott Kim, Bioethics Program, 300 North Ingalls St, 7C27, Ann Arbor, MI 48109 scottkim{at}umich.edu
Background: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
Abbreviations: AD = Alzheimer disease; CI = confidence interval; HRS = Health and Retirement Study; LAR = legally authorized representatives; LP = lumbar puncture; OR = odds ratio; RCT = randomized controlled trial; SBR = surrogate-based research.
Supplemental data at www.neurology.org
Dr. Kim was supported by a grant from the NIA (R01 AG029550) and Greenwall Foundation Faculty Scholars in Bioethics award. Dr. Langa was supported by a grant from the NIA (R01 AG027010) and a Paul Beeson Physician Faculty Scholars in Aging Research award. Dr. Karlawish was supported by a Greenwall Foundation Faculty Scholars in Bioethics award and the Marian S. Ware Alzheimer Program. The National Institute on Aging (NIA) provided funding for the Health and Retirement Study (U01 AG09740) which is performed at the Survey Research Center, Institute for Social Research, University of Michigan.
Authors’ affiliations are listed at the end of the article.
Disclosure: The authors report no disclosures.
Received August 12, 2008. Accepted in final form October 3, 2008.
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
