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. Despite these developments, opportunities for ELSI researchers to present their research to their ELSI colleagues have been limited, as there is no regularly scheduled conference dedicated to ELSI research. Current opportunities are limited to ad hoc sessions in related professional meetings, and tend to be few in number and do not include the range of research or researchers conducting ELSI studies nor offer the depth of exchange and dialogue that a dedicated meeting would provide. To address the need for a regularly scheduled ELSI Congress, we propose to organize biennial ELSI Congresses in 2020, 2022, and 2024. Our multi-disciplinary team brings over two decades of experience in leading ELSI funded research and training programs and engaging a broad range of stakeholders in ELSI research and translational genomics. Guided by the principles of inclusion, diversity and access, the specific aims of this proposal are: 1. To organize three biennial Congresses (2020, 2022, 2024) that highlight high-quality, high-impact ELSI research. 2. To achieve diversity of perspectives and approaches represented in the Congresses towards the goal of increasing the rigor and expanding the intellectual base of ELSI research. 3. To use feedback from Congress organizers and participants to develop improved approaches and features with each subsequent meeting.
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.
