The 7th ELSI Congress convened more than 275 participants from 16 countries to examine the ethical, legal, and social implications of genomics. Marking its 25th anniversary, the meeting explored topics including equity, genomic screening, AI, data governance, and access to emerging technologies, highlighting the growing role of ELSI research in ensuring genomic science advances responsibly and inclusively.
More than 275 interdisciplinary researchers, trainees, clinicians, policymakers, patient advocates, and community partners gathered for the 7th ELSI Congress in June 2026 to discuss the ethical, legal and social implications (ELSI) of advances in genetics and genomics. Attendees represented multiple sectors, including academia, government, industry and nonprofit organizations, as well as 20 academic disciplines and 16 countries. The three-day hybrid meeting featured plenary sessions, paper presentations, panels, workshops, fireside chats, posters and networking events that showcased the breadth and vitality of contemporary ELSI research. UNC School of Medicine Executive Dean Samantha Meltzer-Brody, MD, MPH, launched the meeting with remarks on the importance of ELSI research for medicine, public health and society.
As in prior years, trainee participation was a particular strength of the Congress, with trainees contributing presentations, posters and discussions throughout the meeting. Additionally, 138 participants were attending an ELSI Congress for the first time. Their engagement underscored the continued growth of the field and the emergence of a new generation of ELSI scholars.
The two plenary sessions highlighted major cross-cutting themes of the Congress: bias and disability in genetics research and equity in rare disease treatment. Other sessions addressed access to high-cost genomic technologies and therapies, race and ancestry, Indigenous sovereignty, disability justice, and trust and stewardship of genomic data.
The Congress also featured substantial engagement with the rapidly evolving science and policy of genomic screening. Sessions addressed newborn screening, prenatal and reproductive genomics, return of results, recontact, polygenic risk scores and population screening programs. Across these topics, speakers examined how genomic information is communicated, interpreted and incorporated into clinical care and personal decision-making.
Another notable thread involved challenges related to data governance, artificial intelligence and big-data research. Presentations explored biosecurity; controlled-access genomic databases; fairness in AI-enabled research; governance of legacy datasets; and questions surrounding trust, transparency, and stewardship in an increasingly data-intensive research environment.
The meeting also provided opportunities for reflection on the ELSI field itself. Workshops and panels examined the changing funding environment, advances in ELSI methodologies, qualitative and interdisciplinary research approaches, and the history and future of the ELSI research program. One fireside chat brought together early leaders of the field to reflect on the origins and evolution of ELSI research, while another explored the emerging role of bioethics professionals in pharmaceutical companies. A panel on institutional responsibility in genomics research echoed many of the meeting’s central themes, emphasizing the importance of partnerships, relationships, and the common good in shaping the future of genomic research and medicine.
The Congress also marked its 25th anniversary, prompting reflection on how much genomics and ELSI research have changed since the first Congress in 2001. Genomic science has advanced profoundly over the past 25 years. What was once hypothetical is now reality: gene editing, genome sequencing in newborn care, and expanding use of polygenic scores. New challenges have emerged as genomic data becomes not only personal but also economic. Companies operate as biobanks, while hospitals serve as stewards and sometimes sellers of patient data. Questions of access, control and trust are increasingly shaped by AI and large-scale data infrastructures.
At the same time, ELSI research itself has expanded globally, methodologically and intellectually. There’s greater attention to disparities, international contexts and to genuine community engagement. More voices are participating in ELSI conversations, shaping not only how questions are answered, but which questions are asked.
Yet the persistence of our core concerns is striking. Researchers still grapple with genetic determinism; the role of race, ancestry, and classification in genomic science; uneven access to clear benefits; and the need to maintain guardrails in governance.
The ELSI Congress underscored that ELSI is more than a research program or academic field. It is a multidisciplinary community committed to critically examining how genomic research, medicine and policy are enacted and applied. Its future is not about catching up to science, but growing alongside it and ensuring that ethics, policy and social reflection are part of the process from the start, especially as the questions ahead continue to grow in scope and complexity.
The 2026 ELSI Congress was funded by the National Human Genome Research Institute (1U13HG014594), with additional support from the UNC School of Medicine Office of Research. It serves as a premier forum for examining the ethical, legal, and social implications of genetics and genomics research and practice.