DESCRIPTION (provided by applicant): One of the promises of genomic research is that information about a genetic disease or risk will increasingly provide the basis for screening and prevention to reduce morbidity and mortality. As a result, much of the meaningful medical action stemming from genetic information will take place under the auspices of primary care providers, underscoring the similarities rather than differences between genetic and other medical information. However, there is a crucial way in which genetically based management is different from other medical interventions: 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. From the viewpoint of bioethics, there is an implicit tension between rights of privacy and a putative moral obligation to disclose genetic risk information. A similar tension is found in the law between concerted efforts to preserve genetic privacy, with genetic privacy laws passed or proposed in most states and on a national level, and concurrently, a small, but potentially seminal, number of legal cases that suggest a health care provider may have a legal duty to share genetic risk information. Yet what individuals believe is correct action, and what specific aspects of a genetic risk information situation most influence their determination of why that is correct action, are unknown. Even less is known about how health care providers think about the practical, everyday ethics instantiated in their roles as providers working in a health care setting designed to deliver care to patients one at a time. What are the expectations of both patients and health care providers in regard to sharing medical information beyond the constraints of this setting? 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, and how might they think about whether it is ethically correct and pragmatically possible to do so? These questions exist in a hybrid domain comprising empirical research and ethical consideration. It is the purpose of the proposed project to consider these questions using a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers ("naive" consumers and consumers "experienced" with a genetic disorder in their family). There are considerable data that suggest that the link between public health improvement and genetic information, at least in the near term, runs through primary care providers and patients to their families. It is the purpose of this research to try to identify barriers, both ethical and pragmatic, to the ethical and efficient deployment of genetic information to improve health outcomes.
|Effective start/end date||8/1/06 → 7/31/10|
- National Institutes of Health: $499,029.00
- National Institutes of Health: $290,279.00
- National Institutes of Health: $383,561.00
- Biochemistry, Genetics and Molecular Biology(all)
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