Community-Centered Benefit Sharing and New Data Equities

2021-2022 ADSA Virtual Meeting Series

Panel Discussion

February 9, 2022
12:30pm to 2:00pm
Virtual Presentation


2021-2022 ADSA Virtual Meeting Series 
Title: Community-Centered Benefit Sharing and New Data Equities
Date: Wednesday, February 9, 2022
Time: 12:30–2:00 PM Pacific
Location: Register to receive the Zoom access link

ADSA logoThe 2021-2022 ADSA Virtual Meeting Series continues with this session on community-centered benefit sharing and new data equities. 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.

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

Speakers: Keolu Fox (University of California, San Diego) - Moderator, Latifa Jackson (Howard University), Kaja Wasik (Variant Bio), Ann Mc Cartney (National Institutes of Health, National Human Genome Research Institute, Bioinformatics)