Friday, May 09, 2025
1:20 – 2:25 pm
J. Baskin Aud 101 (flyer)
On Friday, May 09 at 1:20 pm, you are invited to join S&J affiliate and Associate Professor of Biomolecular Engineering Karen Miga’s BME 80G Bioethics course for a talk by Stephanie Malia Fullerton.
A zoom option or recording may be available for members of the campus community who cannot attend in person. Contact Colleen Stone (colleen@ucsc.edu) to request access.
Ethical Implications of Legacy Data Storage and Use: the HGDP as Case Study
Much biomedical research, including genetic research, relies on easily accessible, individual level data on hundreds or thousands of research participants. As the need for larger and larger sample sizes grows and where prospective data collection is challenging, the norm is for investigators to draw on in silico genomic data derived from previous studies, available open-access or via various controlled-access data sharing mechanisms. One such open-access resource, the Human Genome Diversity Project collection, includes cell lines from 1063 anonymous individuals sampled from 52 populations around the world. The cell lines were developed from specimens collected decades prior to the collection being made available in 2002, and in partial response to controversy about prospective collection in Indigenous and marginalized communities. There is no extant record of what biospecimen donors were told about the ways that their samples would be used and very few of those involved in collecting the original samples are still living. Nevertheless, the cell line collection and extensive genetic data derived from the cell lines, including whole genome sequence information, continue to be widely used in many kinds of human genetic research. While evidence of individual harm is lacking, Dr. Fullerton will argue that ongoing open-access use of data of unclear provenance poses numerous risks for the broader genomics research community.
Malia Fullerton, Professor of Bioethics and Humanities, University of Washington School of Medicine.
Malia Fullerton, DPhil, is Professor of Bioethics and Humanities at the University of Washington School of Medicine. She received a doctorate in Human Population Genetics from the University of Oxford and later re-trained in Ethical, Legal, and Social Implications (ELSI) research with a fellowship from the NIH National Human Genome Research Institute. Dr. Fullerton contributes to a range of empirical projects focused on clinical translational genomics including in collaboration with the Electronic Medical Records and Genomics (eMERGE) Network, the Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium, and the Human Pangenome Reference Consortium (HPRC).
Co-hosted by the UCSC Department of Biomolecular Engineering, the Genomics Institute, and the Science & Justice Research Center.