The ELSI Program: Evidence of Policy Impact

描述(由申请人提供)：美国国立卫生研究院和能源部的伦理、法律和社会影响(ELSI)计划是为了解决人类基因组计划提出的伦理和相关问题而设立的。ELSI计划的一个明确目标是影响与遗传学进步引起的伦理、法律和社会问题相关的政策。虽然已经有几次尝试衡量ELSI计划在多大程度上实现了这一目标，但还没有对ELSI对政策的影响进行系统评估。考虑到这一点，这个项目的目标是收集经验数据，以评估ELSI计划自成立以来在国会层面的政策影响。该项目还将有助于评估今后进行更广泛影响研究的可行性。该项目的具体目标是：1)确定内部和外部ELSI资助的项目被设计为影响国会决策的程度；2)确定ELSI研究计划活动和ELSI计划资助的学者和奖学金作为国会决策专业知识来源的影响的性质和程度；以及3)确定ELSI在人类基因组计划过程和ELSI研究计划的生命周期中对国会的影响模式。目标1将通过完成经济、社会和文化权利倡议资助的产品数据库和对这些产品的政策内容进行分析来实现。为了解决目标2和目标3，将收集国会政策文件(例如，国会听证、国会法案、技术评估办公室、国会研究服务处和政府问责局的报告)，并进行内容分析，以评估ELSI研究计划活动和ELSI资助的学者及其工作在一段时间内出现或被引用的频率，以及此类出现所表明的影响程度。公共卫生相关性国立卫生研究院和能源部的伦理、法律和社会影响(ELSI)计划是为了解决遗传学进步带来的伦理、法律和社会问题而设立的。由于所有这些工作都是由公共资金资助的，因此，尽可能确定该计划的有效性是很重要的。有效性的一个衡量标准是ELSI资助的产品在多大程度上影响了国会在遗传学领域的决策，从而对社会，特别是对医疗保健问题(例如，基因测试、遗传咨询和医疗保险)产生了积极影响。

DESCRIPTION (provided by applicant): The Ethical, Legal and Social Implications (ELSI) Programs of the National Institutes of Health and Department of Energy were established to address ethical and related issues raised by the Human Genome Project. A stated goal of the ELSI program has been to influence policy related to the ethical, legal and social issues raised by advances in genetics. While there have been several attempts to measure the degree to which the ELSI program has achieved this goal, there has not been a systematic assessment of ELSI's impact on policy. With this in mind, the goal of this project is to collect empirical data to evaluate the policy impact, at the Congressional level, of the ELSI program, since its inception. This project would also help assess the feasibility of a broader impact study in the future. The specific aims of this project are: 1) To determine the degree to which internal and external ELSI-funded projects have been designed to influence Congressional policy making; 2) To determine the nature and degree of the impact of ELSI Research Program activities and ELSI program-funded scholars and scholarship as a source of expertise in Congressional policy making; and 3) To determine the pattern of ELSI's Congressional impact over the course of the Human Genome Project and the life of the ELSI Research Program. Aim 1 will be addressed through the completion of a database of ELSI-funded products and the analysis of those products for policy content. To address aims 2 and 3, Congressional policy documents (e.g., Congressional hearing testimony, Congressional bills, reports of the Office of Technology Assessment, the Congressional Research Service and the Government Accountability Office) will be collected and content analysis conducted to assess, over time, the frequency with which ELSI Research Program activities and ELSI-funded scholars and their work appear or are cited, and the degree of impact indicated by such appearances. PUBLIC HEALTH RELEVANCE The Ethical, Legal and Social Implications (ELSI) Programs of the National Institutes of Health and Department of Energy were established to address ethical, legal and social issues raised by advances in genetics. As all of this work is publicly funded, it is important to determine, insofar as possible, the effectiveness of the program. One measure of effectiveness is the degree to which ELSI-funded products have influenced Congressional policy-making in the area of genetics, thereby having a positive impact on society, and particularly on issues in healthcare (e.g., genetic testing, genetic counseling and health insurance).