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Current federal regulations allow a legally authorized representative (LAR) to give permission on behalf of another person to participate in research, but defer to the states to define LAR. Since most states have not addressed the issue, most researchers and Institutional Review Boards currently operate in a gray area of law and ethics when it comes to proxy consent for adult research. Despite decades of discussion, a consensus remains elusive.1 But what we are learning about the decisionally impaired may help inform future policy. The article by Guerrera et al. in this issue of Neurology 2 (although their focus is on treatment consent) adds to the growing body of neuropsychological studies on decision-making capacity3 by showing that, even across various instruments for assessing decisional abilities, there may be informative neuropsychological underpinnings to each ability.
We are also learning that the abilities of persons with dementia challenge the stereotypes often assumed in policy discussions. For example, …
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