ABSTRACT

Various medical conditions can cause decisional impairment, including mental illness; neuro-generative brain disorders such as Alzheimer’s disease and other dementias; and injury to the brain resulting from stroke, myocardial infarction, or blunt trauma to the head. This chapter examines several rationales for proxy research consent and shows that these rationales should be rejected as a justification for permitting proxies to enroll decisionally impaired individuals in nonbeneficial experiments. Specific attention is given to bioethics professor Stephen Post’s “common good” rationale. Recommendations are offered for policies governing medical experimentation with decisionally impaired individuals that provide both procedural and substantive protection to this population of research subjects. The access to treatment rationale for proxy research consent assumes that an individual with a disease or disorder will benefit from participating in a medical experiment. Permissive policies regarding proxy research consent provide that access.