The Center for Applied Ethics: Genetics and Genoomics

Is Primary Care Ready to Utilize the Promise of Genetics? A Vignette Study
2006-2009: Oregon Health & Science University
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. This project considers 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). The research will identify barriers, both ethical and pragmatic, to the ethical and efficient deployment of genetic information to improve health outcomes.

Factors Influencing Use of Cancer Genetics by Physicians
2001-2006: National Institutes of Health /National Cancer Institute (Subcontract from University of Vermont)
Primary care providers (PCPs) will increasingly be called upon to identify and counsel individuals with an inherited risk for cancer. The cancer family history is key to identifying potential cancer family syndromes and making recommendations for increased cancer screening and prevention. This project, undertaken with the University of Vermont, Partners Community Healthcare and Boston University, examined factors that influence knowledge and utilization of cancer genetics in primary care practice through three major activities: (1) in-depth interviews with PCPs; (2) a survey to assess PCPs' cancer genetics knowledge and to test a model of factors hypothesized to predict appropriate PCP use of cancer family histories; and (3) an expert panel that used the data to recommend educational objectives for PCP education.

Consumer Perspectives on the Promise of CF Gene Therapy
2000-2004: National Institutes of Health/National Human Genome Research Institute
This project, conducted with partners at Cystic Fibrosis Worldwide, Temple University, St. Vincent’s Hospital and Medical Center of New York, and Brigham and Women's Hospital, assessed the impact of gene therapy research publicity, and its promise of cure, on patients, families, and their physicians. To achieve this goal, the study team conducted a content analysis of gene therapy research coverage in major U.S. newspapers and interviewed adult CF patients and parents of children with CF in Philadelphia and Boston and physicians at CF centers in New England. Interview results were used to develop a consumer-focused survey tool which was administered to adult CF patients and parents of children with CF cared for in New England and to members of Cystic Fibrosis Worldwide across the U.S. Findings were used to guide practice and policy.

SACGT: A Public Consultation on Oversight of Genetic Tests
1999-2000: U.S. Department of Health and Human Services
At the behest of the U.S. Secretary of Health and Human Services under the Clinton Administration, CAE assisted the Secretary's Advisory Committee on Genetic Testing by stimulating and collecting public comments on the oversight of genetic tests – comments which informed federal policies regarding potential regulation of new genetic tests. A summary of public comments submitted via the project's website was used by the SACGT to prepare a report, Enhancing the Oversight of Genetic Tests that was submitted to the Surgeon General and Secretary of Health and Human Services.