This study will examine how the American lay public's understanding, conceptualization, and reaction to the determination of death effects its willingness to donate organs and to support organ procurement policies. The study combines a rigorous research methodology with a community-based strategy designed to assure the translation of research into practical results for the general public. As such, it will serve as a national model for constructive dialogue between the lay community, health care institutions, and public policy makers about this important subject. Since 1968, the concept of brain death and the """"""""dead donor rule"""""""" have guided the determination of death for the purposes of organ procurement. Recent technical advances and the growing organ shortage have prompted the development of protocols for the use of non-heartbeating organ donors (NHBOD) and challenged our definition of death. Previous research has shown knowledge and understanding of how death is determined and one's definition of death and cultural factors such as race/ethnicity may profoundly affect the decision-making process of donor families. This suggests that an understanding of these factors is vital to the development of appropriate organ procurement protocols and policies. This study will be conducted over a two and one-half year period and consist of four steps. First, a Community Advisory Board (CAB) representing members of various Cleveland ethnic and religious communities will be assembled. Second, focus groups selected from the constituencies of the members of the CAB will participate in focus groups discussions which will guide the development of a statewide survey of public attitudes and beliefs. Next, we will conduct a random digit dial survey of Ohio residents' knowledge, attitudes, and beliefs about death and examine its relationship to willingness to donate organs. The major dependent variables will measure subjects' willingness to donate their own organs upon death and the organs of family members. The major independent variables are beliefs and attitudes about death and race/ethnicity. Covariates such as religiosity, social class, and others will be examined as well. Finally, a community dialogue will be implemented to interpret and disseminate the findings and provide recommendations to policy makers.
