GENETICS LEGISLATION--SYNTAX, SCIENCE AND POLICY

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Emerging genetic technology continues to yield valuable clinical and societal benefits, yet the information it produces poses potential threats to civil liberties. With surprising speed, legislators have begun to draft and enact laws intended to protect privacy, confidentiality, and autonomy interests related to genetics and genetic information. In such a rapidly evolving and technically complex area, however, legislators face many challenges. Although scholars have offered valuable policy recommendations, lawmakers lack a source of comprehensive, clear, and unbiased research concerning the ethical, technical, and legal issues that influence genetics legislation. This project is intended to provide legislators with objective and comprehensive information from a nonpartisan source so they can draft genetics-related legislation that accurately conveys the legislative intent; is clearly understood by lay people, scientists, and industry; and avoids unintended adverse effects. To achieve this goal, the project will analyze legislation and the legislative process to identify trends difficulties, lack of uniformity of approaches, and inconsistencies with legislative intent, sound science, and ethical principles. Specifically, the project will track and collect proposed and existing genetics legislation in the nation s 50 states, including that related to the health-care and public health systems, insurance, employment, research, criminal justice, paternity, adoption, and any other legislation, regulations, or case law that significantly relate to human genetics. In addition, the project will survey and interview legislators who draft genetics legislation. Moreover, to inform legislators of relevant scholarly literature, the project will gather, analyze and disseminate current literature on genetics and genetics- related law, ethics, and public-policy issues. Finally, the project will provide a forum for state legislators to discuss genetics law and related policy issues to encourage a more consistent and uniform approach to regulation of genetic information and technologies. The overall objective of the project is to educate legislators about genetics-science, law, and ethics-through reports, articles, a website homepage, and a National Conference. These educational means should give legislators the tools to craft genetics-related statues that: 1) achieve intended legislative and policy goals; 2) are scientifically and ethically sound; 3) protect privacy interests and prevent discrimination; 4) are comprehensible to the lay, scientific, and commercial communities; and 5) avoid unintended burdens on research, medical treatment, and human rights.