Full-spectrum proxy consent for research participation when persons with Alzheimer disease lose decisional capacities: Research ethics and the common good

This article focuses on riskier forms of research in Alzheimer disease (AD). It asks two fundamental questions. First, what is the upper threshold of potential risk that should be allowable in AD Research ("maximal potential risk")? Second, should proxy consent be permitted in higher-risk research even when there is no clear potential therapeutic value to the subject? There has been little discussion of maximal potential risk at a time when studies may be becoming increasingly invasive and risky. Proxy consent under such circumstances merits more thorough defense. This article discusses these questions on the basis of a "common good" ethic and calls for more input from researchers and the AD-affected constituency in resolving them.