Surrogate consent for dementia research: a national survey of older Americans.

TitleSurrogate consent for dementia research: a national survey of older Americans.
Publication TypeJournal Article
Year of Publication2009
AuthorsKim, SYH, Kim, HM, Langa, KM, Karlawish, JH, Knopman, DS, Appelbaum, PS
Date Published2009 Jan 13
ISSN Number1526-632X
Call Numbernewpubs20090302_KimKim_etal.pdf
KeywordsAdvance directives, Age Factors, Aged, Aged, 80 and over, Alzheimer disease, Biomedical Research, Caregivers, Clinical Trials as Topic, Data collection, ethnicity, Female, Humans, Informed Consent, Legal Guardians, Male, Mental Competency, Middle Aged, Patient Participation, Proxy, Research Subjects, Surveys and Questionnaires, Therapeutic Human Experimentation, Third-Party Consent

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.


PMID 19139366

User Guide Notes

Endnote Keywords

Dementia/Surrogate-based research/Surrogate-based research

Endnote ID


Alternate JournalNeurology
Citation Key7318
PubMed ID19139366
PubMed Central IDPMC2663398
Grant ListR01 AG027010 / AG / NIA NIH HHS / United States
U01 AG009740 / AG / NIA NIH HHS / United States
R01 AG029550 / AG / NIA NIH HHS / United States
U01 AG09740 / AG / NIA NIH HHS / United States