Center for Genetic Research, Ethics, and Law

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DESCRIPTION (provided by applicant): The mission of the proposed Center for Genetics Research Ethics and Law (CGREL) is to foster sustained interdisciplinary research on the ethical, legal, and social issues involved in the design and conduct of human genetics research with individuals, families, communities, and populations. CWRU already hosts a variety of research efforts relevant to the CGREL's theme. The CGREL will integrate these efforts to launch new research collaborations and provide the resource structure necessary for their application to high priority genetics research policy questions. The basic architecture of the CGREL consists of six overlapping research groups, six research resource cores, and a research training program. The research collaborations generated by the CGREL will be harnessed to pursue four Center-Wide research aims, which we believe reflect the highest priority needs in genetic research ethics and policymaking: 1. To improve our understanding of the relationship between human genetics research and the humans it seeks to benefit by elucidating the cultural values and beliefs that influence different people's reactions to and experience of genetics research participation. 2. To improve our understanding of the relationship between human genetics research and the human benefits it promises by elucidating the influence of translational incentives, ranging from commercial prospects to benefit-sharing agreements, on the design and conduct of basic genetics research. 3. To anticipate the research ethics and science policy issues raised by new advances in genetics research by analyzing the confluence of human variation research, computational genomics, sequencing technologies, and gene transfer techniques through the lenses of contemporary research regulations and norms. 4. To harness ongoing scholarship on genetics research ethics for practical application by providing evidence-based policy options for use by the scientific community, institutional review boards, and national research regulatory bodies in seeking to improve participant protections in the design and conduct of human genetic research.