Psychosocial and Ethical Literature in Cancer Genetics

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DESCRIPTION (provided by applicant): This application proposes the preparation of a definitive book on state-of-the art psychosocial research and ethical writing and policy relating to cancer genetics and genetic testing for cancer genes. One decade after the initiation of the Ethical, Legal, and Social Implications Program of the Human Genome and the start of the modem era in cancer genetics, this book will summarize and critique existing social science and medical literature to try to answer important questions about the human impact of genetic technology. Advances in genetics promise to catalyze a fundamental change in the practice of medicine. Genetic advances have led to new approaches to the assessment of cancer risk. The coming decades will see an explosion of information about the hereditary nature of disease susceptibility. From its inception, the Human Genome Project has recognized the enormous social ramifications of decoding the human genome. Early indications arc strong that psychosocial factors play a major role in attitudes towards and utilization of genetic technology. Social science research can provide data on which to base development of interventions to maximize the benefits of genetic research. It is crucial, however, that such interventions consider also the ethical aspects of human use of genetic technology. The goals of this project are: 1) To summarize and critique the literature from a broad spectrum of social science and genetic disciplines related to psychosocial and ethical aspects of cancer genetic testing, 2.) To make the area of psychosocial and ethical aspects of cancer genetics more approachable to new/young social science investigators, 3.) To create links and encourage future collaborative research between social scientists working in genetic testing and social scientists with specialties in relevant related areas, 4.) To encourage awareness of the work of international social scientists with regard to psychosocial aspects of cancer genetic testing, and 5.) To encourage translational integration of psychosocial research findings into the development of cancer genetics programs through the provision of accessible summaries of psychosocial and ethical literature for use by medical and genetic professionals who are establishing cancer genetics programs.