What is ELSI Research?
Thirty years ago in the United States, the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH) and its partner in the Human Genome Project (HGP), the Office of Health and Environmental Research at the Department of Energy (DOE), began to award grants to researchers in bioethics, philosophy, law, economics, sociology, health policy, and other disciplines to explore the ethical, legal, and social implications (ELSI) of mapping and sequencing the human genome. Today, the ELSI Research Program of the National Human Genome Research Institute (NHGRI) at the NIH continues the grantmaking activities of the original ELSI grantmaking programs at the NIH and the DOE. Three decades of support have grown ELSI research into a robust, global field of study that occupies a unique position at the nexus of many academic disciplines and in proximity to basic and applied scientific research. In thousands of publications, including many works authored without grant-based funding, ELSI scholars have explored a variety of issues in genetics and genomics research and its clinical translation, as well as broader societal issues raised by emerging technologies in the life sciences. Their work has produced many concrete outcomes that positively shape the conduct of genomic research and protect human rights. The future of ELSI research will be determined in part by the outcome of debates about its role that are taking place in the many domains informed by this area of inquiry.