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

PSC In The News

RSS Feed icon

Smock says cohabitation does not reduce odds of marriage

Smock cited in story on how low marriage rates may exacerbate marriage-status economic inequality

Frey says low turnover in House members related to lack of voter turnout among moderates

Highlights

Susan Murphy named Distinguished University Professor

Sarah Burgard and former PSC trainee Jennifer Ailshire win ASA award for paper

James Jackson to be appointed to NSF's National Science Board

ISR's program in Society, Population, and Environment (SPE) focuses on social change and social issues worldwide.

Next Brown Bag


PSC Brown Bags will return in the fall

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.

Browse | Search : All Pubs | Next