TY - JOUR
T1 - Effect of public deliberation on attitudes toward surrogate consent for dementia research
AU - Kim, S. Y.H.
AU - Kim, H. M.
AU - Knopman, D. S.
AU - De Vries, R.
AU - Damschroder, L.
AU - Appelbaum, P. S.
N1 - Funding Information:
Study funding: Supported by NIH R01AG029550 and the Greenwall Foundation Faculty Scholars Award in Bioethics.
Funding Information:
Dr. S. Kim serves on the editorial board of the Journal of Empirical Research on Human Research Ethics; has recently served as Associate Editor of BMC Psychiatry and on the editorial board of the American Journal of Bioethics; serves on the NIMH Data Safety and Monitoring Board and the FDA Neurological Devices Panel of the Medical Devices Advisory Committee; receives publishing royalties for Evaluation of Capacity to Consent to Treatment and Research (Oxford University Press, 2009); and receives/has received research support from the NIH (NIMH, NIA, NINDS, NINR) and the Greenwall Foundation. Dr. M. Kim is a member of the Scientific Merit Review Board for the Veterans Affairs Health Services Research and Development Field Program; and receives research support from the NIH (NIA, NIMH, NIDA) and the US Department of Veterans Affairs. Dr. Knopman serves as Deputy Editor for Neurology®; has served on a data safety monitoring board for Eli Lilly and Company; has served as a consultant for Elan/Janssen AI; is an investigator in clinical trials sponsored by Elan/Janssen AI, Baxter International Inc., and Forest Laboratories, Inc.; and receives research support from the NIH. Dr. De Vries receives research support from the National Library of Medicine, the NIH (NIA, NINDS, NIGMS, NICHD), and the Robert Wood Johnson Foundation. L. Damschroder has received funding for travel and speaker honoraria from the Robert Wood Johnson Foundation and receives research support from the US Department of Veterans Affairs, the NIH (NIA), and the European Commission/University of Geneva. Dr. Appelbaum is contributing editor to Psychiatric Services, is consulting editor for Ethics and Behavior, serves on the editorial board of the Journal of Forensic Psychiatry and Psychology (UK), Schizophrenia Bulletin, BioMed Central: Psychiatry, Psychiatry, Psychology and Law (Australia/NZ), and the American Journal of Bioethics—Primary Research, the advisory board of the International Review of Psychiatry and the editorial advisory board of Law and Human Behavior and Psychiatry and the international editorial board of the Journal of Ethics in Mental Health and the Brazilian Journal of Psychiatry; receives publishing royalties for Clinical Handbook of Psychiatry and the Law, 4 th ed. (Lippincott Williams & Wilkins, 2007), Classification of Violence Risk (COVR): Professional Manual and Software (Psychological Assessment Resources, Inc., 2005), The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) (Professional Resource Press, 2001), Rethinking Risk Assessment: The MacArthur Study of Mental Disorder and Violence, Informed Consent: Legal Theory and Clinical Practice, 2 nd edition (Oxford University Press, 2001), Assessing Competence To Consent To Treatment: A Guide for Physicians and Other Health Professionals (Oxford University Press, 1998), MacArthur Competence Assessment Tool for Treatment (MacCAT-T) (Professional Resource Press, 1998), and Almost a Revolution: Mental Health Law and the Limits of Change (Oxford University Press, 1994); receives/has received research support from the NIH (NCI, NCRR, NIA, NIMH, NINR, NHGRI); and has an ownership share in COVR, Inc.
PY - 2011/12/13
Y1 - 2011/12/13
N2 - 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 ncrease sustained 1 month after the deliberation session. No changes occurred in the contro 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 nvolving informed, in-depth exploration of the relevant scientific and ethical issues.
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 ncrease sustained 1 month after the deliberation session. No changes occurred in the contro 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 nvolving informed, in-depth exploration of the relevant scientific and ethical issues.
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U2 - 10.1212/WNL.0b013e31823648cb
DO - 10.1212/WNL.0b013e31823648cb
M3 - Article
C2 - 21975207
AN - SCOPUS:84862943597
SN - 0028-3878
VL - 77
SP - 2097
EP - 2104
JO - Neurology
JF - Neurology
IS - 24
ER -