RT Journal Article
SR Electronic
T1 Effect of public deliberation on attitudes toward surrogate consent for dementia research
JF Neurology
JO Neurology
FD Lippincott Williams & Wilkins
SP 2097
OP 2104
DO 10.1212/WNL.0b013e31823648cb
VO 77
IS 24
A1 Kim, S.Y.H.
A1 Kim, H.M.
A1 Knopman, D.S.
A1 De Vries, R.
A1 Damschroder, L.
A1 Appelbaum, P.S.
YR 2011
UL http://n.neurology.org/content/77/24/2097.abstract
AB 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. %AD =Alzheimer disease; DD=democratic deliberation; LAR =legally authorized representative; RCT =randomized controlled trial.