Preservation of the Capacity to Appoint a Proxy Decision Maker

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Abstract
Alzheimer disease (AD) is an incurable and devastating illness. By 2040, the number of persons with AD worldwide is expected to reach 80.1 million.1 Therefore, clinical research with persons with AD is a public health priority. However, such research raises the ethical question of how best to enroll decisionally impaired adults in clinical research (ie, who, if anyone, can provide consent on their behalf and under what conditions).2 The response to this question varies widely among states in the United States.3 In the United Kingdom, there are at least 3 sets of regulations that apply, depending on where the study is located and whether the research is a clinical trial.4 Furthermore, when AD research involves invasive or potentially risky procedures, regulatory bodies may be reluctant to allow family members to provide surrogate consent on behalf of potential participants. An example of this is a sham surgery controlled clinical trial of gene transfer for AD in which the investigators and the Recombinant DNA Advisory Committee of the National Institutes of Health decided to limit recruitment to persons who were competent to provide consent.5

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