This project builds on an exploratory study of psychosocial and ethnocultural factors related to intentions to obtain genetic testing for heritable colon cancer, and a pilot study of genetic counseling for intermediate-risk colorectal cancer (CRC) family members.

This application proposes three interrelated phases of research. The first phase will extend the prospective descriptive study of psychosocial aspects of molecular testing for HNPCC in colorectal cancer (CRC) cases, the first degree relatives (FDRs) of CRC cases who are found to be carriers of an HNPCC mutation, and spouses/partners (S/Ps) of the FDRs. The second phase will study the psychosocial issues related to participation in a phase II randomized, controlled chemoprevention trial for HNPCC involving adherence to a Cox II inhibitor and periodic check-ups over a 1 year period.

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.

Using a combined qualitative-quantitative approach, this renewal project will explore clinicians strategies for communicating prenatal genetics information and service options to Mexican-origin clients in California and Texas, where Mexican-origin women constitute a large and growing proportion of women in prenatal care. The study will focus on clinicians with different professional backgrounds working in diverse practice settings within distinct regulatory contexts.

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.