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. 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 300 persons affected by genetic conditions or their family members. As a comparison, 100 persons affected by HIV and 100 persons with diabetes 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. By identifying the particular concerns and values about confidentiality and privacy of individuals (or family members of individuals) affected by a genetic disease as well as persons (or family members of persons) living with other medical conditions, policy makers will be better positioned to develop appropriate uses and safeguards of genetic information.
| Kass, Nancy E; Medley, Amy M; Natowicz, Marvin R et al. (2007) Access to health insurance: experiences and attitudes of those with genetic versus non-genetic medical conditions. Am J Med Genet A 143:707-17 |
| Johnson, Summer; Kass, Nancy E; Natowicz, Marvin (2005) Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions. Genet Test 9:269-80 |
