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).

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Small Research Grants (R03)
Project #
3R03HG004753-01A1S1
Application #
7942256
Study Section
Ethical, Legal, and Social Implications of Human Genetics Study Section (ELS)
Program Officer
Boyer, Joy
Project Start
2009-03-20
Project End
2011-02-28
Budget Start
2009-03-20
Budget End
2010-02-28
Support Year
1
Fiscal Year
2009
Total Cost
$40,208
Indirect Cost
Name
Johns Hopkins University
Department
Type
Organized Research Units
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218