ABSTRACT
This chapter concerns those persons who are the "beneficiaries" of the new treatments for catastrophic diseases and who at the same time are also the "means" through which necessary testing to develop these new treatments is performed. In addition to the values and choices of these patient-subjects, the chapter focuses on their relationships to relatives and physician-investigators. The chapter evaluates the capacity of patient-subjects to participate in decisionmaking about catastrophic diseases by exploring the rapidly developing doctrine of "informed consent". It presents an "informed consent model" of decisionmaking as a means of illustrating and examining the extent and limits of patient-subjects' authority and capabilities. The model attempts to incorporate a realistic view of the limitations and constraints that psychological forces and personal interrelationships place on informed and voluntary decisionmaking. For the "informed consent" model of decisionmaking to be useful, it must take account of the limitations on patient-subjects' capacity to make intelligent and insightful choices.
