Equity, ethics and the promise of partnership in genomic medicine

Abstract

A recent New York Times article¹ highlights a pivotal moment for genetic research: a first revenue-sharing agreement between a biotech company, Variant Bio, and the communities with whom they partner to collect genomic data. Their attempt to address the systemic inequities and historical exploitation that has characterized genomic science raises important questions about how the field can responsibly and feasibly build on this first step.

Although underrepresented in genetic research, data from Indigenous and minoritized communities have propelled several important scientific discoveries^2,3. However, these contributions have been historically characterized by a lack of informed consent, exclusion from decision-making, and inequitable distribution of benefits. Variant Bio aims to address this through community engagement, allocating up to 10% of project budgets to community programs and sharing 4% of their annual revenue, as well as seeking to make resulting medications affordable for these communities.