abstract
Future of Health Summit 2024

Data Sets That Address All Our Diversity

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The Human Genome Project, completed over 20 years ago, heralded the frontier of individualized medicine. Since then, we have developed massive databases and biorepositories that form the critical backbone necessary for genetics-based interventions and precision diagnostics. While sequencing and the related data gathered in recent decades have been critical for biomedical research, these developments are not for all because many of the databases and repositories consist of data and samples collected primarily from populations of European ancestry. As a result, critical innovations like CRISPR, novel biomarkers, and AI analyses—based on biased datasets—can miss diagnoses and leave patients untreated. It is widely recognized that public health and biomedical research must prioritize data of all communities. Still, more should be done. Panelists will discuss the partnerships, forward-thinking, and active steps we need to take to ensure that the biomedical data being collected and deployed reflect the diverse span of the evolving population so that all may benefit from these remarkable medical advances. 

    Moderator

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    Jeannie Baumann

    Senior Reporter, Bloomberg Industries Group

    Speakers

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    Lu de Souza

    Vice President and Executive Medical Director, Oracle Learning Health Network
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    Eugene Manley

    Founder and CEO, STEMM and Cancer Health Equity (SCHEQ)
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    Steven Posnack

    Principal Deputy Assistant Secretary for Technology Policy and Principal Deputy National Coordinator for Health Information Technology, US Department of Health and Human Services
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    Nandini Selvam

    President, Government Solutions, IQVIA
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    Karriem Watson

    Chief Engagement Officer, All of Us Research Program, National Institutes of Health