Ethical and Legal Issues in the Diffusion of Genetic Tests (II)

This project will study factors influencing physician's adoption of new genetic tests and their attitudes towards how tests should be provided. It will also begin to explore consumer attitudes. The specific aims of the project include the following. 1) To use a mailed questionnaire to compare physicians who have already offered a carrier test for cystic fibrosis to physicians who adopt the test while this study is in progress and to others who have not yet used it and examine the influence of physicians' knowledge of genetics and genetic tests, their perception of their patients' expectations regarding test use, their experience with and concerns about legal liability, and their sensitivity to whether their patients' insurance can pay for the test or whether they have actually used this test. 2) To use interviews and questionnaires to learn how major health care insurers decide when to include new innovative technologies, such as genetic tests, in their benefits packages and what factors influence their decisions. 3) To develop and lead a Task Force on Genetic Testing to explore and make recommendations concerning a number of issues around the development and use of genetic tests. 4) To hold focus groups of consumers to explore their attitudes toward having presymptomatic genetic testing, their expectations of how physicians would and should respond to this technology, and discrepancies between consumers' and physicians' attitudes. Attitudes of African-American women towards genetic tests for breast cancer will be explicitly considered. The study will, therefore, identify the extent of departures from ethical norms in the diffusion of new genetic tests. It will suggest particular situations in which remedial educational interventions or policy changes could improve the safe and effective delivery of genetic tests.