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、法律的和社会影响（ELSI）项目旨在解决人类基因组计划提出的伦理和相关问题。ELSI计划的一个既定目标是影响与遗传学进步所引起的伦理、法律的和社会问题有关的政策。虽然已经有几次尝试来衡量ELSI方案实现这一目标的程度，但还没有系统地评估ELSI对政策的影响。考虑到这一点，本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一级的政策影响。这一项目还将有助于评估今后进行更广泛的影响研究的可行性。该项目的具体目标是：1）确定ELSI资助的内部和外部项目对国会政策制定的影响程度; 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政策制定专业知识来源的影响的性质和程度; 3）确定ELSI在人类基因组计划和ELSI研究计划的生命过程中对国会影响的模式。 目标1将通过完成环境法研究所资助产品的数据库和分析这些产品的政策内容来实现。为了实现目标2和3，国会政策文件（例如，国会听证会证词，国会法案，技术评估办公室，国会研究服务和政府问责局的报告）将被收集和内容分析进行评估，随着时间的推移，与ELSI研究计划活动和ELSI资助的学者和他们的工作出现或被引用的频率，以及这种外观所表明的影响程度。公共卫生相关性美国国立卫生研究院和能源部的伦理、法律的和社会影响（ELSI）项目旨在解决遗传学进步所引发的伦理、法律的和社会问题。由于所有这些工作都是由政府资助的，因此尽可能确定该方案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，从而对社会产生了积极影响，特别是对医疗保健问题（例如，基因检测、基因咨询和健康保险）。

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).