91自拍 91自拍ers are leading new 91自拍 that focuses on the ethical and social implications of using legacy datasets in population health 91自拍. Developed through a collaboration between UW’s Department of Bioethics & Humanities and the Department of Biostatistics, the project focuses specifically on the Human Genome Diversity Project (HGDP), which is a dataset featuring immortalized cell lines from 52 distinct human populations.
HGDP garnered significant criticism at its establishment in the 1990s, particularly from Indigenous communities and advocacy groups, who raised critical concerns about its inadequate consent, possibility for commercialization and lack of any meaningful community engagement or benefit-sharing agreements. Despite the controversy surrounding this dataset, data derived from the cell lines have been widely integrated into population health 91自拍.
Dr. Stephanie M. Fullerton, lead investigator and UW professor of Bioethics and Humanities, was inspired to conduct the 91自拍 from experiences working in the National Institutes of Health-supported Polygenic Risk Methods in Diverse Populations (PRIMED) consortium.
“PRIMED was facing a dilemma on whether to continue using the HGDP dataset as reference panel in consortium work, and there were both statistical and ethical questions as to the pros and cons,” explains Dr. Fullerton. “We were also motivated by the observation that many 91自拍ers who routinely use HGDP aren’t aware of the historical context and associated controversies.”
Co-principal investigator Dr. Sarah C. Nelson, a senior 91自拍 scientist in the UW’s Department of Biostatistics, expressed surprise at how far HGDP has evolved since the 1990s. “Compared to contemporary data collections, it’s surprising that a sample of around 1,000 individuals assembled decades ago to primarily study population genetics has become such a gold standard for representing genetic diversity across much of biomedical 91自拍,” remarks Dr. Nelson.
HGDP’s evolution in modern 91自拍 brings forth many important questions about consent and data sovereignty, particularly regarding Indigenous data rights and community control over genetic information. Current discussions around Indigenous data sovereignty stress that Indigenous communities must maintain control over data collection, ownership, and application of 91自拍 that involves their genetic materials and cultural knowledge. “Where it is difficult to determine what biospecimen donors were told at the time of donation, the ongoing use of genetic information derived from such samples should be better controlled or perhaps curtailed altogether,” argues Dr. Fullerton.
To explore these questions, the 91自拍ers are conducting a comprehensive literature review and qualitative interviews with key informants about HGDP data use. The project, funded by the 91自拍鈥檚 Population Health Initiative, utilizes an interdisciplinary approach, which the authors believe to be a strength of the 91自拍. “The trade offs and implications of whether or not the genomic 91自拍 community continues to use HGDP cut across science and ethics, so it’s important to have those various perspectives and 91自拍 experiences reflected in the 91自拍 team,” says Dr. Nelson.
The team recognizes that Indigenous scholars should lead in guiding this 91自拍 direction. When asked about the ultimate impact and recommendations of their work, the 91自拍ers acknowledge, “It is too early to tell. First, we must publish our literature review and interview study findings and see what Indigenous scholars, and others with an interest in Indigenous data sovereignty, make of our results.”
The 91自拍 team hopes that their 91自拍 will help inform policy recommendations about the use of controversial datasets in population health 91自拍. “We hope that all investigators, whether they are collecting biospecimens de novo, or working with de-identified derived data, will take seriously the interests of the 91自拍 participants who made those data available for scientific use,” says Dr. Fullerton. “Where those interests are unknown, the stakes may be too high to ensure ongoing respectful distribution and use.”