The ELSI Program: Evidence of Policy Impact

ELSI 计划：政策影响的证据

• 批准号: 7660980
• 负责人: DEBRA JH MATHEWS
• 金额: $ 8.2万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-03-20 至 2011-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7660980
• 关键词: Accountability; Address; Appearance; Area; Case Study; Classification; Communities; Data; Databases; Department of Energy; Ethics; Frequencies; Funding; Future; Genetic; Genetic Counseling; Genetic screening method; Goals; Government; Grant; Health Insurance; Healthcare; Hearing; Human Genome Project; International; Life; Measures; Mind; Nature; Pattern; Policies; Policy Making; Program Effectiveness; Public Policy; Publishing; Reporting; Research; Scholarship; Science Policy; Services; Societies; Source; Technology Assessment; Time; United States National Institutes of Health; Work; design; effectiveness measure; ethical legal social implication; evidence base; federal policy; programs; public health relevance

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).

描述（由申请人提供）：建立了国家卫生研究院和能源部的道德，法律和社会影响（ELSI）计划，以解决人类基因组项目提出的道德和相关问题。 ELSI计划的一个既定目标是影响与遗传学进步有关的道德，法律和社会问题有关的政策。尽管已经有几次尝试衡量ELSI计划实现了这一目标的程度，但还没有系统地评估ELSI对政策的影响。考虑到这一点，该项目的目的是收集经验数据，以评估自成立以来，在国会层面上的政策影响。该项目还将有助于评估未来一项更广泛影响研究的可行性。该项目的具体目的是：1）确定内部和外部ELSI资助的项目旨在影响国会政策制定的程度； 2）确定ELSI研究计划活动和ELSI计划资助的学者和奖学金的影响的性质和程度，作为国会政策制定专业知识的来源； 3）确定在人类基因组项目和ELSI研究计划的生活中，ELSI国会影响的模式。 AIM 1将通过完成ELSI资助产品的数据库以及对政策内容的这些产品的分析来解决。 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.建立了公共卫生相关性的道德，法律和社会影响（ELSI）计划（ELSI）计划，建立了能源部和能源部的计划，以解决遗传学进步提出的道德，法律和社会问题。由于所有这项工作都是公开资助的，因此在尽可能的范围内确定该计划的有效性很重要。一种衡量效率的衡量标准是ELSI资助的产品影响了遗传学领域的国会政策制定，从而对社会产生积极影响，尤其是对医疗保健的问题（例如，基因检测，遗传咨询和健康保险）。