title: Effect of public deliberation on attitudes toward surrogate consent for dementia research.
abstract: OBJECTIVE
  To assess the informed, deliberative views of the older general public toward a policy of allowing surrogate consent for Alzheimer disease (AD) research.
  
  
  METHODS
  A total of 503 persons aged 50+ recruited by random digit dialing were randomly assigned to 1 of 3 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 deliberation session (or equivalent time), and 1 month after the session, regarding their attitudes toward a policy of allowing surrogate consent for research studies of varying risks and potential benefits (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial).
  
  
  RESULTS
  At baseline, a policy of surrogate consent for AD research was supported by 55%-91%, depending on the scenario. The education group had a transient increase in support for one research scenario after receiving the information materials. In the deliberation group, support for surrogate consent was higher after deliberation for all scenarios (67% to 97%), with much of the increase sustained 1 month after the deliberation session. No changes occurred in the control group. The study's limitations include self-selection of participants due to the demanding nature of attendance at the deliberation sessions.
  
  
  CONCLUSIONS
  This sample of the older general public generally supported a policy of surrogate consent for AD research at baseline. Their support increased with democratic deliberation involving informed, in-depth exploration of the relevant scientific and ethical issues.
authors.affiliation: Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor 48109, USA.
authors.forename: S Y H
authors.initials: SY
authors.lastname: Kim
authors.forename: H M
authors.initials: HM
authors.lastname: Kim
authors.forename: D S
authors.initials: DS
authors.lastname: Knopman
authors.forename: R
authors.initials: R
authors.lastname: De Vries
authors.forename: L
authors.initials: L
authors.lastname: Damschroder
authors.forename: P S
authors.initials: PS
authors.lastname: Appelbaum
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000628:therapy*; D001290:Attitude; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D016032:Randomized Controlled Trials as Topic / Q000941:ethics*