title: Surrogate consent for dementia research: a national survey of older Americans.
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.
authors.affiliation: Bioethics Program, University of Michigan, Ann Arbor, MI 48109, USA. scottkim@umich.edu
authors.forename: S Y H
authors.initials: SY
authors.lastname: Kim
authors.forename: H M
authors.initials: HM
authors.lastname: Kim
authors.forename: K M
authors.initials: KM
authors.lastname: Langa
authors.forename: J H T
authors.initials: JH
authors.lastname: Karlawish
authors.forename: D S
authors.initials: DS
authors.lastname: Knopman
authors.forename: P S
authors.initials: PS
authors.lastname: Appelbaum
mesh_terms: D016223:Advance Directives / Q000941:ethics / Q000639:trends*; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000451:nursing / Q000523:psychology / Q000628:therapy*; D035843:Biomedical Research / Q000941:ethics*; D017028:Caregivers / Q000331:legislation & jurisprudence* / Q000706:statistics & numerical data; D002986:Clinical Trials as Topic / Q000941:ethics / Q000706:statistics & numerical data; D003625:Data Collection; D005006:Ethnicity / Q000523:psychology / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000592:standards / Q000706:statistics & numerical data*; D007872:Legal Guardians; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D010358:Patient Participation; D019727:Proxy; D035842:Research Subjects; D011795:Surveys and Questionnaires; D036302:Therapeutic Human Experimentation; D020458:Third-Party Consent / Q000941:ethics / Q000706:statistics & numerical data*