Surrogate consent for dementia research: A national survey of older Americans

S. Y H Kim, H. M. Kim, K. M. Langa, J. H T Karlawish, David S Knopman, P. S. Appelbaum

Research output: Contribution to journalArticle

55 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)149-155
Number of pages7
JournalNeurology
Volume72
Issue number2
DOIs
StatePublished - Jan 13 2009

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Dementia
Research
Alzheimer Disease
Research Subjects
Surveys and Questionnaires
Minority Groups
Spinal Puncture
Retirement
Drug and Narcotic Control
Informed Consent
Vaccines
Health
Genes

ASJC Scopus subject areas

  • Clinical Neurology

Cite this

Kim, S. Y. H., Kim, H. M., Langa, K. M., Karlawish, J. H. T., Knopman, D. S., & Appelbaum, P. S. (2009). Surrogate consent for dementia research: A national survey of older Americans. Neurology, 72(2), 149-155. https://doi.org/10.1212/01.wnl.0000339039.18931.a2

Surrogate consent for dementia research : A national survey of older Americans. / Kim, S. Y H; Kim, H. M.; Langa, K. M.; Karlawish, J. H T; Knopman, David S; Appelbaum, P. S.

In: Neurology, Vol. 72, No. 2, 13.01.2009, p. 149-155.

Research output: Contribution to journalArticle

Kim, SYH, Kim, HM, Langa, KM, Karlawish, JHT, Knopman, DS & Appelbaum, PS 2009, 'Surrogate consent for dementia research: A national survey of older Americans', Neurology, vol. 72, no. 2, pp. 149-155. https://doi.org/10.1212/01.wnl.0000339039.18931.a2
Kim, S. Y H ; Kim, H. M. ; Langa, K. M. ; Karlawish, J. H T ; Knopman, David S ; Appelbaum, P. S. / Surrogate consent for dementia research : A national survey of older Americans. In: Neurology. 2009 ; Vol. 72, No. 2. pp. 149-155.
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abstract = "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.",
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