Respecting Autonomy and Enabling Diversity: The Critical Need for Demographic Variation in Research Datasets

Kayte Spector-Bagdady, JD, MBioethics
Associate Director, Center for Bioethics & Social Sciences in Medicine
Assistant Professor, Department of Obstetrics & Gynecology
University of Michigan Medical School

Promising advances in precision health and other kinds of big data research rely on large datasets to analyze correlations between genetic variants, behavior, environment, and outcomes to improve population health. But to ensure equitable access to scientific advances, datasets must include patients reflecting the demographic distribution of disease. This talk will discuss different theoretical as well as recruitment and consent approaches to improve data collection and sharing practices in ways that are both respectful of individual patient autonomy and equitable in impact across diverse communities.

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Professor Kayte Spector-Bagdady is the Chair of the Research Ethics Committee at the University of Michigan, where she also serves as the ethicist on the Michigan Medicine Human Data and Biospecimen Release Committee. A lawyer and bioethicist by training, Professor Spector’s research focuses on the ethics and regulation of secondary research use of health data and human biospecimens. Her work has been funded by the National Human Genome Research Institute, the National Cancer Institute, the Greenwall Foundation, and the National Center for Advancing Translational Sciences. Professor Spector was Associate Director for President Obama’s Bioethics Commission.