For nearly three decades, the National Human Genome Research Institute (NHGRI) has supported the study of the ethical, legal and social implications (ELSI) of genetic and genomic research for individuals, families and communities and supported the growth of a generation of ELSI researchers. ELSI research has developed into a multidisciplinary field that spans the humanities, social sciences, natural sciences, engineering, medicine and law.

Public Health Relevance Section Policies in the U.S. increasingly rely upon genomic information as a biometric to inform visa application processes, by verifying biological relationship claims or statehood claims, and broad DNA collection from non-criminals may help with missing persons, disaster victim, and terrorism investigations. The societal implications of these genomic applications are broad, with benefits and risks to the individuals undergoing testing, the communities in which they live, and the nation at large.

PROJECT NARRATIVE Health systems could work with genetic patients by directly notifying relatives who receive care in the same health system, but no U.S.-based care models have emerged and many questions with ethical and social implications remain. We propose a human-centered design and feasibility study of health system-led familial outreach and risk notification.

PUBLIC HEALTH RELEVANCE: Researchers engaged in conducting genetic and genomic science are significant players in advancing biomedical science and health care. Through their work, they are a vital part of the ethical, legal, and social outcomes of science, but there is a gp in knowledge concerning how genomic scientists navigate the complex ethical, legal, and social issues related to their research.

PROJECT NARRATIVE The goal of the biennial ELSI Congress is to provide a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal and social implications of genetic and genomic research and its translation into clinical care.