ELSI Congress 2026, 2028, 2030

Univ Of North Carolina Chapel Hill, Chapel Hill NC

Investigators

Abstract

Since its founding in 1990, the NHGRI Ethical, Legal, and Social Implications (ELSI) Research Program has supported empirical, analytical, and conceptual research to anticipate and address the ELSI of genetics and genomics. This broad focus has fostered a substantial and multidisciplinary community encompassing a wide range of experiences and expertise. We propose to support three biennial conferences of the ELSI research community (referred to as the “ELSI Congress”). With dedicated conferences, the ELSI research community can meet to share research findings, develop collaborations, particularly among trainees and early career scholars, and foster participation from a broad array of scientific perspectives, intellectual traditions, and lived experiences. While each of the three ELSI Congresses will have their own set of unique aims, as determined by the Organizing Committees, the following specific aims reflect our approach to overall conference planning. Aim1: Expand ELSI’s reach to scholars across new generations, communities, and disciplines. The core goal of the ELSI Congress is to bring together ELSI researchers from the broadest array of scientific perspectives, intellectual traditions, and lived experiences through various outreach and communication efforts. We propose to invite participation from less resourced institutions and to contact NIH grant recipients focusing on strengthening genetic variation research. Aim 2: Utilize innovative methods to identify emerging trends in genomics, and important ELSI themes for upcoming Congresses. To ensure that the key topics addressed at each Congress reflect the latest developments in both ELSI and genomics, we would employ a modified version of horizon scanning methodology. Horizon scanning is a multi-step process recommended in NIH’s Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) framework to identify and prioritize emerging biotechnologies and applications that have the potential to impact society (NExTRAC, 2020). We would use this strategy to examine the recent state of the ELSI and genomics fields and help predict new developments. Results from the horizon scanning would be analyzed by our team and used along with card sort methodology to assist the Organizing Committee in prioritizing and selecting topics and themes for the Congress. These activities would be repeated prior to each Congress. Aim 3: Develop robust strategies for reviewing each Congress and a plan for how we implement what we learn. To assess how effectively we've maximized participation in ELSI Congresses, we would gather basic information about participants during the registration process and assess any changes over time. Through post-Congress evaluation surveys and follow-up Zoom sessions, we would also use feedback gathered from the Congress participants, ELSI Program Staff, and the Organizing Committee to inform future meeting format decisions, topic and theme selections, and venue selections. We would also ask about perspectives and research findings that attendees believe might have been missing from Congress proceedings, as well as asking for specific recommendations for planning future Congresses.