Am J Psychiatry 161:797-806, May 2004
© 2004 American Psychiatric Association
Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations
Scott Y.H. Kim, M.D., Ph.D.,
Paul S. Appelbaum, M.D.,
Dilip V. Jeste, M.D., and
Jason T. Olin, Ph.D.
OBJECTIVE: The ethics of involving decisionally incapable adults in research will continue to grow in importance as more research is conducted to address the problems of decisionally impaired persons, especially elderly persons. The authors provide an updated discussion, critique, and recommendations regarding the need for clear legal and regulatory policy on this issue. METHOD: The authors summarize and build on discussions of a workshop on proxy and surrogate consent in geriatric neuropsychiatric research sponsored by the Aging Research Consortium of the National Institute of Mental Health. They incorporate the views of various stakeholders present at the workshop as well as review recent federal and state initiatives, recent empirical research and media reports, and various commission reports and relevant regulations. RESULTS: Despite a wave of initiatives in the late 1990s to clarify policy, surrogate consent for research continues to be a murky legal area and incapable subjects in the United States still lack clear regulatory protection. There is evidence that conservative risk management strategies by institutional review boards and their institutions may severely restrict research with decisionally impaired subjects. A passive approach to this problem may no longer be feasible. A recent federal advisory report on human research protections and legislative initiatives in some states could begin to provide a blueprint for future policy making. Interim recommendations for various stakeholders are given. CONCLUSIONS: It is imperative that the scientific community, patients and their advocates, and policy makers at all levels establish a constructive dialogue to clarify ethical and legal standards in the area of proxy and surrogate consent for research.
This article has been cited by other articles:
|
|
|
|
 
D. T. Chen, L. D. Case, T. G. Brott, R. D. Brown Jr, S. L. Silliman, J. F. Meschia, B. B. Worrall, and for the ISGS Investigators
Impact of Restricting Enrollment in Stroke Genetics Research to Adults Able to Provide Informed Consent
Stroke,
March 1, 2008;
39(3):
831 - 837.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
S. Y. H. Kim, P. S. Appelbaum, J. Swan, T. S. Stroup, J. P. McEvoy, D. C. Goff, D. V. Jeste, J. S. Lamberti, A. Leibovici, and E. D. Caine
Determining when impairment constitutes incapacity for informed consent in schizophrenia research
The British Journal of Psychiatry,
July 1, 2007;
191(1):
38 - 43.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
B. Resnick, A. L. Gruber-Baldini, I. Pretzer-Aboff, E. Galik, V. C. Buie, K. Russ, and S. Zimmerman
Reliability and Validity of the Evaluation to Sign Consent Measure
Gerontologist,
February 1, 2007;
47(1):
69 - 77.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
Bibliography for Ethics, Professionalism, and End of Life Care
Focus,
January 1, 2007;
5(4):
417 - 419.
[Full Text]
[PDF]
|
|
|
|
|
|
|
D. K Brandt, J. A Hind, J. Robbins, A. S Lindblad, G. Gensler, G. Gill, H. Baum, D. Lilienfeld, J. A Logemann, and Communication Sciences and Disorders Clinical Tria
Challenges in the design and conduct of a randomized study of two interventions for liquid aspiration
Clinical Trials,
October 1, 2006;
3(5):
457 - 468.
[Abstract]
[PDF]
|
|
|
|
|
|
|
A. J. Bharucha, A. J. London, D. Barnard, H. Wactlar, M. A. Dew, and C. F. Reynolds III
Ethical Considerations in the Conduct of Electronic Surveillance Research
J. Law Med. Ethics,
September 1, 2006;
34(3):
611 - 619.
[PDF]
|
|
|
|
|
|
|
S. Y.H. Kim and K. Kieburtz
Appointing a proxy for research consent after one develops dementia: The need for further study
Neurology,
May 9, 2006;
66(9):
1298 - 1299.
[Full Text]
[PDF]
|
|
|
|
|
|
|
P. S Appelbaum
Decisional Capacity of Patients With Schizophrenia to Consent to Research: Taking Stock
Schizophr Bull,
January 1, 2006;
32(1):
22 - 25.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
L. B Dunn, P. J Candilis, and L. W. Roberts
Emerging Empirical Evidence on the Ethics of Schizophrenia Research
Schizophr Bull,
January 1, 2006;
32(1):
47 - 68.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
E. R Saks, L. B Dunn, and B. W Palmer
Meta-Consent in Research on Decisional Capacity: A "Catch-22"?
Schizophr Bull,
January 1, 2006;
32(1):
42 - 46.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
J. R Muroff, S. L Hoerauf, and S. Y H Kim
Is Psychiatric Research Stigmatized? An Experimental Survey of the Public
Schizophr Bull,
January 1, 2006;
32(1):
129 - 136.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
T S. Stroup and P. S Appelbaum
Evaluation of "Subject Advocate" Procedures in the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) Schizophrenia Study
Schizophr Bull,
January 1, 2006;
32(1):
147 - 152.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
S. Y.H. Kim, H. M. Kim, C. McCallum, and P. N. Tariot
What do people at risk for Alzheimer disease think about surrogate consent for research?
Neurology,
November 8, 2005;
65(9):
1395 - 1401.
[Abstract]
[Full Text]
[PDF]
|
|
|
Get information about faster international access.
Privacy Policy
Copyright © 2004
American Psychiatric Association.
All rights reserved.
Home
| Search
| Current Issue
| Past Issues
| Subscribe
| All APPI Journals
| Help
| Contact Us
|
