GENETICS LEGISLATION--SYNTAX, SCIENCE AND POLICY

新兴的基因技术继续产生有价值的临床和 社会效益，但它产生的信息带来了潜在的 对公民自由的威胁。立法者以惊人的速度 开始起草和颁布旨在保护隐私的法律， 与遗传学和遗传学有关的保密性和自主性利益 信息。在这样一个快速发展和技术复杂的领域， 然而，立法者面临着许多挑战。尽管学者们已经 提供了有价值的政策建议，立法者缺乏来源 全面、清晰和不偏不倚的关于伦理、 影响遗传学立法的技术和法律问题。这 该计划旨在为立法者提供客观和 来自无党派来源的全面信息，这样他们就可以起草 准确传达立法信息的遗传学相关立法 意图；外行、科学家和工业界都清楚地理解； 并避免意外的不良影响。为了实现这一目标，该项目 将分析立法和立法过程，以确定趋势 困难、方法缺乏统一性以及与 立法意图、健全的科学和伦理原则。 具体地说，该项目将跟踪和收集拟议的和现有的 S在全国50个州的遗传学立法，包括有关 医疗保健和公共卫生系统，保险，就业， 研究、刑事司法、亲子鉴定、收养和任何其他 与人权密切相关的法律、法规或判例法 遗传学。此外，该项目还将进行调查和访谈 起草遗传学立法的立法者。此外，要告知 相关学术文献的立法者，该项目将聚集， 分析和传播当前关于遗传学和遗传学的文献- 相关的法律、伦理和公共政策问题。最后，该项目 将为州立法者提供一个论坛，讨论遗传法和 相关政策问题，鼓励更加一致和统一的 对遗传信息和技术进行监管的方法。这个 这项计划的总体目标是教育立法者 遗传学-科学、法律和伦理-通过报告、文章、网站 主页，和一个全国会议。 这些教育手段应该给立法者提供工具来制作 与遗传学相关的法律：1)实现预期的立法和 政策目标；2)科学和道德健全；3)保护 隐私利益和防止歧视；4)可理解为 非专业人士、科学界和商业界；以及5)避免意外 研究、医疗和人权方面的负担。

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.