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Wednesday, February 9 • 12:30pm - 2:00pm
Community-Centered Benefit Sharing and New Data Equities

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Data collected from underrepresented communities is of utmost interest for a variety of purposes, from drug therapeutics to algorithm development. Yet, there are still no detailed regulations and guidelines around data governance and reciprocity, neither on a global scale nor in the United States. While many researchers advocate for the increased collectivization of information from public and open databases for the “greater good of research and innovation”, historically oppressed communities are concerned that such data extraction may continue existing colonial exploitative models that do not translate to direct benefit for those people from whom the data is derived.

We argue that it is imperative to create new models for data equities to encourage benefit-sharing. In recent years, new models of engagement have been developed that ensure research participants benefit from the development of new therapeutics (by receiving free or low-cost access to developed therapies); receive a share of any financial value created; and can take greater control in the data governance and analysis process through scientific capacity building. In this interactive session, we will hear perspectives on data justice from three scholars (one moderator and two speakers) from Indigenous and Black communities and two representatives (both speakers) in the industry and government sectors to learn how all areas of research and development can ethically promote data equity and empowerment.

Session Chair: Krystal Tsosie (Native BioData Consortium, Arizona State University)

Keolu Fox (University of California, San Diego) - Moderator
Latifa Jackson (Howard University)
Kaja Wasik (Variant Bio)
Ann McCartney (National Institutes of Health, National Human Genome Research Institute, Bioinformatics)
Krystal Tsosie (Native BioData Consortium, Arizona State University)

avatar for Keolu Fox

Keolu Fox

University of California, San Diego
Keolu Fox is the first Native Hawaiian to receive a doctorate in genome sciences, and he is an Assistant Professor at the University of California, San Diego (UCSD), where is a co-founder and co-director of the world's first Indigenous Futures Institute. Keolu is also affiliated with... Read More →

avatar for Latifa Jackson

Latifa Jackson

Howard University
Latifa Jackson received her PhD in Biomedical Science at Drexel University with a focus in bioinformatics and a Masters degree in Ecology & Evolutionary Biology from University of Arizona. She uses informatics and machine learning approaches to study genetic patterns that contribute... Read More →
avatar for Ann McCartney

Ann McCartney

Ann McCartney graduated top of her class in Genetics and Cell Biology and was granted an Irish Research Council Award to complete her PhD in Bioinformatics and Molecular Evolution in Dublin City University, Ireland. Her first Postdoctoral Research Fellowship for "Genomics Aotearoa... Read More →
avatar for Krystal Tsosie

Krystal Tsosie

ELSI and Policy Director / Incoming Assistant Professor, Native BioData Consortium / Arizona State University
Krystal Tsosie (Diné/Navajo Nation) is an Indigenous geneticist-bioethicist at Vanderbilt University, incoming faculty at Arizona State University. As an advocate for Indigenous genomic and data sovereignty, she co-founded the first US Indigenous-led biobank, a 501c3 nonprofit research... Read More →
avatar for Kaja Wasik

Kaja Wasik

CSO and Co-Founder, Variant Bio
Kaja Wasik is the co-founder and Chief Science Officer at Variant Bio, a Seattle-based startup developing therapies to improve global health by studying the genes of individuals and populations who are outliers for medically relevant traits. Kaja started Variant Bio because she believes... Read More →

Wednesday February 9, 2022 12:30pm - 2:00pm PST
Virtual Zoom link coming soon!

Attendees (7)