GENETICS & DISABILITY INSURANCE--ETHICS, LAW & POLICY

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DESCRIPTION (Adapted from the Investigator's Abstract): Issues of genetic testing and the potential for discrimination by insurance providers have received considerable scholarly attention during the past decade. This work has not directly addressed disability insurance, which is an important part of the social safety net and has features that are clearly different from either health or life insurance. Similarly, a small fraction of the states prohibiting genetic discrimination in insurance have included disability insurance. The University of Minnesota Center for Bioethics and the University's Joint Degree Program in Law, Health & the Life Sciences plan to complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on our findings. To achieve the goals of this project, the center and Joint degree Program will convene an interdisciplinary working group comprised of some of the best U.S. scholars and experts working on ethical, legal, and social issues raised by genetics, insurance, and disability. The group will include members from the field of ethics, policy and law, social science, medical science, people who live with disabilities, and the insurance industry. The Working Group will convene four times during a two-year period. In conjunction with the group's third meeting, the Center and Joint Degree Program will host an invitational national conference on the ethical, legal, and policy issues raised by genetic testing and disability insurance. Through these efforts the investigators will clarify the issues; develop a consensus about effective responses; author a consensus paper with their recommendations; and produce the first comprehensive collection of articles on the issues to be published as a journal symposium.