Starting at the inception of the Human Genome Project, NHGRI has been at the forefront of research into the Ethical, Legal, and Social Implications (ELSI) of genomic advances. From stand-alone investigator-initiated studies to research embedded within large international genomics collaborations (e.g., HapMap Project, 1000 Genomes Project, and H3Africa), NHGRI has funded in-depth research endeavors that aim to ask and answer questions about individuals' and communities' attitudes about genomics, legal issues associated with genomics, the responsibilities of genomic researchers to their research participants, and numerous other issues. This funding support has gone to investigators from a wide range of disciplines -bioethics, law, behavioral and social sciences, policy, philosophy, and theology.
In 2004, NHGRI launched a new program called the Centers of Excellence in ELSI Research (CEER) Program, with the purpose of developing research teams with the expertise and flexibility to respond rapidly to emerging and evolving ELSI issues.
The CEER Program began with exploratory grants and full-fledged Centers, and has evolved throughout the years. This past May, four new CEERs were funded (see genome.gov/27565088/2016-News-Release-NIH-funds-new-studies-on-ethical-legal-and-social-impact-of-genomic-information/2016-News-Release-NIH-funds-new-studies-on-ethical-legal-and-social-impact-of-genomic-information for details). These Centers focus on studying the use of genomic information in the prevention and treatment of infectious disease; genomic information privacy; communication about prenatal and newborn genomic testing results; and the impact of genomics in American Indian and Alaskan Native communities. The researchers supported by these grants join an already impressive group of CEER investigators (see genome.gov/25522195/Centers-for-Excellence-in-ELSI-Research-Awarded-Grants/Centers-for-Excellence-in-ELSI-Research-Awarded-Grants for details).
From the early days of genomics to the current explosion of research in genomic technologies and genomic medicine, ELSI research has been a key component of NHGRI's research portfolio. ELSI researchers have answered questions of critical importance, informed study designs, and advised the development of public policy and research guidelines. In many cases, ELSI research deals with issues that arise from potential genomic technologies long before they find their way into general use. The CEER Program has provided an opportunity to be forward-looking and to illuminate ELSI issues in a multi-disciplinary manner. Through this Program, unique collaborations have formed, and a research community has solidified and strengthened.
For more information about the CEER Program, visit genome.gov/15014773/Centers-of-Excellence-in-ELSI-Research/Centers-of-Excellence-in-ELSI-Research.