ELSI Research Programme of the NHGRI

Abstract

Abstract The Ethical, Legal and Social Implications (ELSI) research programme of the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) is a grant programme that supports research designed to anticipate and address the implications of human genetics and genomics research for individuals, families, communities and society. Programme staff and the researchers the programme supports are involved in the bioethics components of major genomics research projects and in many activities that inform genomics‐related research, health and social policies. The programme operates collaboratively with the genomics research community, and in general, the supported research has brought greater depth and strength to the genomics research enterprise. The ELSI programme is a unique experiment in the annals of NIH‐funded biomedical research, and initial results indicate that the experiment has been successful. Key concepts: The Ethical, Legal and Social Implications (ELSI) research programme, within the Division of Extramural Research at the National Human Genome Research Institute of the National Institutes of Health, supports research designed to anticipate and address the implications of human genetic and genomic research, technologies and information. The ELSI programme is currently the largest governmental supporter of bioethics research in the world. Most ELSI research is investigator‐initiated, but the programme periodically issues requests for applications (RFAs) to solicit research targeted at particular high‐priority areas. Neither genomics researchers nor administrators responsible for the oversight of genomics research have controlled the content or direction of ELSI research. The research priorities of the ELSI programme have evolved and span a range of issues relating to the implications of genomics for individuals, families, communities and the broader society. ELSI research aims to be anticipatory by encouraging researchers to identify issues likely to be raised by advances in genetics and genomics research before they arise. ELSI research involves researchers from a wide range of disciplines and is often highly transdisciplinary. The involvement of ELSI programme staff and ELSI researchers in major genomics research projects makes it possible to marshal the findings of relevant ELSI studies directly to inform the design and conduct of genomics research. ELSI research has had a considerable impact on both health care and broader social policies.