Center for Genetic Research Ethics and Law

  • Marshall, Patricia A. (PI)
  • Aulisio, Mark (CoPI)
  • Juengst, Eric T. (CoPI)
  • Sharp, Richard R (CoPI)
  • Wiesner, Georgia L. (CoPI)
  • Youngner, Stuart J. (CoPI)

Project: Research project

Project Details

Description

DESCRIPTION (provided by applicant): In its first five years, the CWRU Center for Genetic Research Ethics and Law (CGREAL) explored a range of ethical, legal, and policy issues in the design and conduct of genomic gene-discovery research. We now propose to follow the trajectory of genomics into its translational phase, where its expanded research needs and higher clinical aspirations are creating new ethical, legal, and policy challenges. Translational research is often simplified as a linear conversion of scientific discoveries into clinical applications, from bench to bedside. In reality, it is complicated by interactions among a wide range of stakeholders. As translational genomic research moves increasingly into the public square of clinical, commercial, community, and public health settings in its search for data sources and practical applications, it must negotiate the competing interests and values of those settings in order to achieve its scientific goals. CGREAL's 5-year goal is to provide evidence and arguments that can help all parties in that negotiation work toward a just and responsible outcome. In its new incarnation, CGREAL will consist of three programs designed to help develop the policies and practices that should guide that process. Our Transdisciplinary Research Program will study translational genomic research by mapping and comparing stakeholder views on four value-sensitive features: driving hypotheses; instrumental strategies; social constraints; aspirational goals. Wherever divergent interests force decisions about these features, translational genomic research will encounter ethical, legal, and social challenges, triggering our normative and conceptual analyses of the arguments involved. Our Translation to Policy Program will develop our analyses into policy proposals for addressing the challenges our own research uncovers. In addition, we will monitor the field at large to steer our research agenda towards other emergent policy problems. This program will identify and communicate policy options at institutional, professional, regulatory, or legislative levels, in collaboration with other biomedical research policy development programs. Our Training Program will continue to expand its scope to bring a wider range of voices to ELSI research and policy development.
StatusFinished
Effective start/end date9/1/047/31/16

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