Home > Publications . Search All . Browse All . Country . Browse PSC Pubs . PSC Report Series

PSC In The News

RSS Feed icon

Weir's 2009 report on NFL brain injuries got more attention than neurological findings published in 2005

Edin and Shaefer's book a call to action for Americans to deal with poverty

Weir says pain may underlie rise in suicide and substance-related deaths among white middle-aged Americans


MCubed opens for new round of seed funding, November 4-18

PSC News, fall 2015 now available

Barbara Anderson appointed chair of Census Scientific Advisory Committee

John Knodel honored by Thailand's Chulalongkorn University

Next Brown Bag

Monday, Dec 7 at noon, 6050 ISR-Thompson
Daniel Eisenberg, "Healthy Minds Network: Mental Health among College-Age Populations"

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

Archived Abstract of Former PSC Researcher

Kim, S.Y., H.M. Kim, Kenneth M. Langa, J.H. Karlawish, D.S. Knopman, and P.S. Appelbaum. 2009. "Surrogate consent for dementia research: A national survey of older Americans." Neurology, 72(2): 149-155.

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. Neurology (R) 2009; 72: 149-155

DOI:10.1212/01.wnl.0000339039.18931.a2 (Full Text)

PMCID: PMC2663398. (Pub Med Central)

Country of focus: United States of America.

Browse | Search : All Pubs | Next