Variant Bio’s Benefit-Sharing Model Featured in Genome Research
Years ago, when I was still a graduate student in cultural anthropology, if someone had told me that one day I’d be working for a drug discovery company, I probably would have thought they were joking. Yes, I knew anthropologists working in the private sector, and after I finished my PhD, I spent several years as a consultant applying ideas from the social sciences to tackle business challenges for clients around the world. But working for a genomics company? Writing articles about the ethics of genomic research? Back then, I’m not sure I would have connected the dots to anthropology.
Then along came Variant Bio, whose mission it is “to leverage the power of human genetic diversity to develop life-saving therapies.” As far as I could tell, it was — and remains to this day — a real outlier in the biopharma world. From the moment it was founded, leaders at Variant Bio set about figuring out how to integrate community-engaged research and benefit-sharing policies into their business model. They formed an ethics advisory board before even a scientific advisory board, and they hired anthropologists right out of the gate. Taking as guidepost the Indigenous data sovereignty movement, Variant Bio built out a unique approach to benefit sharing that aims to increase equity in genomics, and to prioritize the perspectives of the communities who participate in research with us.
I was lucky enough to be involved with Variant Bio from the outset, and so it happens that I work with incredible colleagues both within the company and around the world to put these policies and programs into practice. One of the earliest partnerships I was involved with took place in Madagascar, where, together with collaborators at the University of Antananarivo, we co-designed a multi-sited community engagement process, a locally determined short-term benefit-sharing plan, local capacity-building opportunities, and the in-person return of research results to participating communities.
Now, the approach to benefit sharing we piloted through this project is the subject of a perspective piece, “Why community consultation matters in genomic research benefit-sharing models,” featured in the January 2024 issue of Genome Research. By publishing this article in an open-access, peer-reviewed journal, we hope to share a practical example of community-driven benefit sharing with as many researchers as possible.
It’s very gratifying to see our work come full circle, and nowadays it makes all the sense in the world to me why anthropologists are involved in this process. While community consultation is becoming more common in biomedical research, there is still so much work to do. Looking forward, I am hopeful that Variant Bio’s model of community-driven benefit sharing can become the norm in genomic research, rather than the exception.
