In 2024, the World Medical Association updated the Declaration of Helsinki on the occasion of its 60th anniversary. One key shift was that of the language around people in research - instead of being referred to as subjects, they would be known as participants. While this shift may seem editorial, it represents an evolution in our thinking about the research ecosystem. Genomics, specifically data sharing in genomics, provides an interesting, higher stakes test case for this evolving conceptualization of research participation. In this talk that combines bioinformatics and bioethics, I will discuss the foundations and futures of genomic data sharing and consent to participant in research in the pangenomic era.
Jonathan LoTempio Jr., PhD, is an Assistant Professor in the Department of Pediatrics, Division of Genetics, at the University of California, Irvine School of Medicine. His work integrates genomics, bioinformatics, and bioethics to study how large genomic datasets are built, shared, and governed. He contributes to several international genomics initiatives, including the Human Pangenome Reference Consortium and the Genomics Research to Elucidate the Genetics of Rare Diseases Consortium (GREGoR), where his work focuses on participant perspectives, data sharing practices, and the ethics of building shared genomic resources. His broader scholarship explores the governance of biomedical data in a global research environment. This work draws on collaborations with scientists, ethicists, and policy scholars across the United States and Europe. He has also participated in international research exchange through the Fulbright Program. At UC Irvine, LoTempio leads an interdisciplinary research program that combines computational genomics with empirical bioethics methods, including participant engagement and policy analysis. His work aims to ensure that emerging genomic infrastructure develops in ways that are scientifically rigorous, ethically grounded, and responsive to the communities whose data make genomic discovery possible.