GENETICS LEGISLATION--SYNTAX, SCIENCE AND POLICY

遗传学立法——语法、科学和政策

• 批准号: 2774873
• 负责人: LAWRENCE O GOSTIN
• 金额: $ 41.53万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-09-30 至 2001-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2774873
• 关键词: employment /unemployment; family structure /dynamics; genetics; health care policy; health insurance; health related legal; health science research; human subject; legal /correctional; public health; science education

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.

新兴的基因技术继续产生有价值的临床和 社会效益，但它产生的信息构成了潜在的 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权利益 信息. 在这样一个快速发展和技术复杂的领域， 然而，立法者面临许多挑战。 虽然学者们 提供了有价值的政策建议，立法者缺乏一个来源， 全面，清晰，公正的研究，关于道德， 影响遗传学立法的技术和法律的问题。 这 该项目旨在为立法者提供客观和 无党派人士的全面信息，以便他们能够起草 准确传达立法内容的遗传学相关立法 意图;被外行人、科学家和行业清楚地理解; 并且避免了非预期的不利影响。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，缺乏统一的方法，以及与 立法意图、可靠的科学和道德原则。 具体而言，该项目将跟踪和收集拟议和现有的 美国50个州的遗传学立法，包括有关 卫生保健和公共卫生系统、保险、就业、 研究，刑事司法，亲子关系，收养，以及任何其他 与人权有重大关系的立法、法规或判例法 遗传学 此外，该项目还将调查和采访 起草基因立法的立法者。 此外，通知 立法者的相关学术文献，该项目将收集， 分析和传播遗传学和遗传学方面的现有文献- 相关的法律、道德和公共政策问题。 最终该项目 将为州立法者提供一个讨论遗传学法的论坛， 相关政策问题，以鼓励更一致和统一的 遗传信息和技术的管理方法。 的 该项目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 主页和全国会议。 这些教育手段应使立法者有能力 与遗传学相关的法规：1）实现预期的立法和 政策目标; 2）科学和道德上合理; 3）保护 隐私利益和防止歧视; 4）是可以理解的， 非专业人士、科学界和商业界;以及5）避免无意的 研究、医疗和人权方面的负担。