SynopsisWith an aging population, and the prevalence of psychiatric illness in the older population expected to rise dramatically in coming decades, advances in geriatric psychiatry research are urgently needed. Ethical issues in the design, conduct, and monitoring of research involving older adults parallel these same issues related to human subjects research generally. Yet a number of special issues relevant to geriatric psychiatry research merit further discussion. These special issues include the assessment of capacity in populations where cognitive disorders are more prevalent, the role of surrogate decision makers, the legal status of surrogate consent, the use of advanced directives for research participation, and research involving suicidal individuals.
Surrogate (proxy) decision makers must make research decisions for people with dementia who lack decision-making capacity. Proxies' decision-making processes are minimally understood. We randomly assigned 82 proxies of AD patients to informed consent for one of three hypothetical protocols with differing levels of risk and benefit. Proxies answered questions about potential benefits of the described research to the patient and society, as well as about whether they would enroll their relative and why or why not. Proxies interested in enrolling their relative cited the potential for direct benefit to their relative, altruism, and trust in researchers. Those declining cited risks, inconvenience, and stage of illness. Proxies weighed numerous factors, incorporating both substituted judgment and best interests standards in their decision-making processes. Although further empirical work is needed to understand the influences on and adequacy of proxies' decision making regarding research, these findings can help inform policy regarding surrogate consent.
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