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.
The main goal of this proposal is to develop appropriate comprehensive counseling guidelines for predictive colon cancer gene testing by assessing perceptions and attitudes toward the gene tests, including their social and psychological determinants, and assessing the impact of the test on at-risk persons.
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 in the context of health care reform. 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 450 persons affected by genetic conditions or their family members.
The purpose of this project is to analyze various conceptual frameworks for the development of policy with respect to genetics research, counseling, testing, screening, treatment and use of genetic information. The project will explore several theoretical models for overall regulation of medical genetics: the individual health model, the fundamental rights model, the public health model, and the equal opportunity model.
This renewal project, conducted by a consortium of three universities (University of Michigan, Michigan State University and Tuskegee University) will develop a process for engaging minority populations of diverse socioeconomic levels in the process of rational democratic deliberation on moral and political issues relating to genome research and its resulting technology, and will develop recommendations for laws, professional standards and institutional policies regarding the use and application of genome research and technology.
The specific aims of this project are: to identify the ethical, legal, and social implications of the HGP from the perspectives of two Native American communities, with particular emphasis on Native conceptions of privacy issues; to describe the decision making process in each community, with particular emphasis on collective decision making and the extent of communal authority over individual members; to compare the results of ELSI research conducted with the two Native populations; and to use this comparison to construct a model for ELSI research and possible HGP participation with non-We
This project is designed to analyze the adequacy of the Belmont Report's distinction between research and treatment as a basis for informed consent policy especially as it pertains to gene therapies. The project will produce an interdisciplinary evaluation of informed decision making about gene therapies and will develop new policies to guide decisions about the presentation and use of these new therapies.
This project will investigate the nature of disability to articulate, for public policy, the purposes for which emerging testing capabilities ought ethically to be used. To analyze the nature of disability, the project participants--including experts from disability studies, medical geneticists, genetic counselors, philosophers, and others--will examine two distinctions that are not well addressed in the literature: the distinction between nondisease and disease traits, and the distinction between medical and social disabilities.