ELSI Research Program Fact Sheet

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


The Ethical, Legal and Social Implications Research Program

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From the beginning of the Human Genome Project (HGP), project organizers foresaw that human genomic research would raiseethical, legal and social issues.  Recognizing of the importance of these issues led to a decision by HGP leaders to set aside a portion of the HGP budget to support research related to these issues, and to the establishment of the Ethical, Legal, and Social Implications (ELSI) Research Program. 

Today, nearly 25 years later, with a legislative mandate that no less than 5 percent of the NHGRI budget be set aside for research on these issues, the ELSI Research Program continues to thrive. In fact, the term "ELSI" not only has become a staple in the lexicon of the field of genomics, but it has become shorthand for the bioethical issues that affect many other areas of science.

The ELSI Research Program is by far the largest dedicated extramural bioethics research program at the NIH.  Its budget has grown from $1.57 million in fiscal year 1990 to over $18 million in fiscal year 2014.  The program has awarded over $335 million in research support, and has funded more than 500 projects, which collectively, have resulted in thousands of publications.  Administratively housed within NHGRI's Division of Genomics and Society, a division designed to collaborate closely with other components of the institute involved in related activities, such as the Division of Policy, Communication, and Education and two programs within the institute's Division of Intramural Research:  the Social and Behavioral Research Branch and the Bioethics Core.

Over the years, the direction of the ELSI Research Program has been shaped by a series of external evaluations, reviews, and NHGRI-wide strategic planning processes. In 2012, the Genomics and Society Working Group (a working group of the NHGRI National Advisory Council for Human Genome Research) was established to make recommendations on short- and long-range planning and priority setting for NHGRI activities related to genomics and society, with primary emphasis on the ELSI Research Program.

The ELSI Research Program's current research priorities fall into four broad categories: 

The investigators funded by the ELSI Research Program come from a broad range of disciplines, including genetics and genomics, clinical medicine, bioethics, the social sciences (e.g., psychology, sociology, anthropology, political science and communication sciences), history, philosophy, literature, law, economics, health services, and public policy.Many of the funded grants are highly multidisciplinary and employ a wide range of both empirical and non-empirical methodologies.

Most of the research ELSI  funds is investigator-initiated, reflecting in large part the desire to maintain the intellectual independence of its supported investigators. However, the research program occasionally issues Requests for Applications (RFAs) to solicit research on particular high-priority topics that require immediate or more focused attention. The program also supports a number of ELSI projects that are embedded in larger clinical sequencing grant programs.

In addition, ELSI supports several Centers of Excellence in ELSI Research (CEERs). The CEERs are designed to support the creation and maintenance of the infrastructure necessary to foster highly transdisciplinary research; facilitate the translation of research into health, research, and public policies and practices; and train the next generation of investigators in the field. To build on the training activities supported through the CEERs, the ELSI has recently initiated an institutional training grant program for predoctoral and postdoctoral trainees.

Impact

Examples of the impact of the ELSI Research Program can be seen in a number of areas: 

Often, the impact of ELSI research has come less from the direct translation of published study findings into a formal policy, than more from ELSI investigators, operating independently as scholars, serving directly on commissions or other policy-making bodies (at the international, state or local institutional levels), or providing expert testimony or other forms of expert analysis to those groups, and consultations to both the research and clinical communities.

The most consequential impact of the ELSI Research Program has arguably come about in even more subtle ways, such as the contributions these studies have made to incremental changes in the cultural milieu in which genomics research is conducted, genomic medicine is implemented and genomic information is incorporated into decision-making in various areas of society.    

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Last Updated: January 9, 2015