Confidentiality, Privacy & Insurance

The purpose of this project is to contribute empirical data concerning the values, beliefs, and experiences of persons (or family members of persons) with genetic conditions regarding informational privacy and access to health insurance in the context of health care reform. These data then will be analyzed for their normative and legal implications for public policy. Using a cross-sectional design, data will be obtained by personal interviews with 450 persons affected by genetic conditions or their family members. As a comparison, 150 persons affected by HIV, 150 persons with diabetes, and 150 persons with a mental illness or their family members also will be interviewed. Participants will be asked questions concerning their beliefs about who has access to medical information under what circumstances, their experiences concerning medical disclosure, their fears concerning potentially harmful disclosure, and the value they place on restricting access to medical information and on having the government protect them against unwanted losses of privacy with respect to such information. Questions also will be asked concerning specific experiences regarding access to health insurance and the relationship between their employment choices and securing or maintaining health insurance benefits. Data obtained from this project should materially assist policy makers in effecting the necessary balance between the privacy interests of the individual and the interest of the public in the health benefits likely to emerge from the Human Genome Project.