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Surrogate Decision-Making and Related Issues

Beck, Cornelia; Shue, Valorie*

Alzheimer Disease & Associated Disorders: April-June 2003 - Volume 17 - Issue - p S12-S16
Informed Consent in Alzheimer Disease Research; A Mandate for Change

This article discusses the role of surrogate decision-makers for persons who are cognitively impaired and cannot give informed consent. Questions raised follow. Is surrogate consent in research analogous to proxy consent in health care? What are some issues in surrogate consent? How does the risk–benefit ratio affect the consent process? What are the investigator's responsibilities regarding surrogate consent? Issues discussed include advance directives, durable power of attorney, legally authorized representatives, substituted judgment, double informed consent, responsibilities of surrogates, and barriers to informed consent. The article ends with recommendations to clarify state and national laws, change research designs, and establish a national mechanism for reviewing promising research that is usually prohibited.

Department of Geriatrics and Department of Psychiatry and Behavioral Sciences, and *Department of Psychiatry and Behavioral Sciences, University of Arkansas for Medical Sciences, Little Rock, Arkansas

Address correspondence and reprint requests to Dr. Cornelia Beck at Department of Geriatrics, Mail Slot 808, 4301 W. Markham, Little Rock, AR 72205, U.S.A.

© 2003 Lippincott Williams & Wilkins, Inc.