The identification of a genetic disorder or risk raises the question of risk for family members and with it concerns about rights and obligations in regard to disclosure of genetic risk information. This project uses a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers (i.e., consumers experienced with a genetic disorder in their family and those who are not) to examine the following:
- What are the expectations of both patients and health care providers in regard to sharing medical information?
- What specific aspects of a genetic risk information situation might influence providers to believe it necessary to reach out to a patient’s family members? How might they think about whether it is ethically correct and pragmatically possible to do so?
The research will identify barriers, both ethical and pragmatic, to the ethical and efficient deployment of genetic information to improve health outcomes.
EDC Project Director: Deborah E. Sellers, Ph.D., MS
Funders: U.S. Department of Health and Human Services, National Institutes of Health, National Human Genome Research Institute
(EDC is a subcontractor on this project to Oregon Health & Science University.)