ABSTRACT

This chapter describes and evaluates the strengths and weaknesses of the decisionmaking processes currently utilized by professional groups, public bodies and quasi-public groups. The interaction between physician-investigators and patient-subjects, on the one hand, and professional and public institutions, on the other, has always been an uneasy one, characterized less by friendly collaboration than by avoidance, suspicion, criticism, and hostility. There is insufficient awareness that participation by professional and public institutions in decisionmaking may indeed lighten the burdens placed on physician-investigators. In addition to the express authority wielded by the many official and professional bodies, a less formal, but in some instances equally influential, role in catastrophic disease decisionmaking is assumed by a number of private individuals and organizations which take on a public aspect through their activities. These include newspapers, private participants in the legal process, organizations which "lobby", and nongovernmental sources of funding.