| This dissertation is a study of one statewide community bioethics program, the Citizens' Committee on Biomedical Ethics. The mission of this citizen-initiated association was to involve, through educational forums, the general public in discussions of individual and societal choices around specific bioethical issues, such as decision-making and resource allocation.;The research focused on developing an understanding of the association's leadership group at its formative stage. Specific attention was given to their sociodemographic characteristics, their involvement in bioethics, their views of select bioethical issues, and their perceptions of, roles in, and priorities for this community bioethics program. Further, by learning about these citizen-leaders, we also gained insight into the Citizens' Committee as a reform oriented voluntary association. Data was collected through participant-observation of Board meetings and select community bioethics programs over eighteen months, and by structured interviews with thirty-seven eligible Board members and eleven advisors. Secondary data analysis was undertaken to compare citizen-leaders' responses to key bioethical issues with those of the general citizenry.;The findings demonstrate that the citizen-leaders were a homogeneous group: well-educated professionals who were involved in health care issues. Their interest in bioethics was long-standing. Their definitions of bioethics incorporated an amalgam of social, economic, and ethical concepts. Both citizen-leaders and general citizens believed that personal decision-making, including refusal of care, belonged to competent individuals and to the family of someone deemed incompetent. Both groups wanted to control their own medical treatment through the use of advanced directives. Citizen-leaders supported resource allocation priorities that emphasized prevention, primary care, and universal access to basic health care. The citizen-leaders were recruited through personal and professional networks and had a strong commitment to citizen participation in bioethics. They viewed the Citizens' Committee as a vehicle for promoting social change by bridging the gap in knowledge between experts and the public and by representing the opinions of the general citizens to legislators and health policy-makers. |
