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.