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 study the role of patient preferences and other factors in choices regarding use of prenatal screening for and diagnosis of chromosomal disorders in a racially/ethnically diverse population. The study will collect detailed information regarding the distribution of individual preferences for test characteristics and outcomes by racial/ethnic group, as well as other factors which may be related to choices regarding the use of these tests.

This study employs a critical content analytic approach to ascertain the degree of perfectionist, essentialist and discriminatory social norms associated with the rise in public discourse about genetic medicine. It employs a coding protocol with demonstrated intercoder reliability. Using this protocol, coders will be able to produce a quantitative survey of a structured random sample of congressional discourse, newspapers, popular magazines, and television coverage from 1950 to 1995.

This project will develop, produce, disseminate and evaluate a one-hour educational videotape for primary care clinicians (physicians, nurses, others) on the clinically relevant science and counseling skills needed to provide accurate and sensitive clinical genetic services.

This prospective, longitudinal study will examine decision-making about pre-surgery BRCA1/2 testing and the medical, psychosocial, and economic outcomes of testing among newly-diagnosed breast cancer patients who are at high risk for having a BRCA1/2 mutation. The theoretical framework for this investigation is derived from Expected Utility Theory.

The specific aims of this research are to develop, implement, and assess the effectiveness of a decision balance risk-benefit component as part of the informed consent process for women deciding to accept or reject free hemophilia A Carrier testing. To accomplish this, this project will randomly assign 414 women, by family membership, to receive either a standard or experimental informed consent statement.

This study (N=300) of women at high familial risk for breast and ovarian cancer aims to develop and assess a core intervention, based on state-of-the-art theory and research, to facilitate well-informed decisions for BRCA1/2 testing. In this procedure the genetic cancer testing candidate is helped to cognitively and emotionally anticipate scenarios about alternative potential outcomes of testing outlined in the informed consent process.

This study will explore the process by which families at increased risk of adult-onset disease decide to involve their children in research on genetic susceptibility. Through interviews with parents at increased risk for heart disease and breast cancer, their children between the ages of 10 and 17, and the physicians they identify as influential, this study will explore perceptions about the motivations and barriers to participation of children in research on genetic susceptibility to these two diseases.