title: How important is 'accuracy' of surrogate decision-making for research participation?
abstract: BACKGROUND
  There is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.
  
  
  RESULTS
  503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.
  
  
  CONCLUSIONS
  Most people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.
authors: Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, Michigan, USA. scottkim@med.umich.edu
authors: Scott Y H
authors: SY
authors: Kim
authors: H Myra
authors: HM
authors: Kim
authors: Kerry A
authors: KA
authors: Ryan
authors: Paul S
authors: PS
authors: Appelbaum
authors: David S
authors: DS
authors: Knopman
authors: Laura
authors: L
authors: Damschroder
authors: Raymond
authors: R
authors: De Vries
mesh_terms: D000368:Aged; D035843:Biomedical Research; D003657:Decision Making; D005260:Female; D006306:Health Surveys; D006801:Humans; D007258:Informed Consent; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D010358:Patient Participation; D011795:Surveys and Questionnaires
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