Participating in a genetic study means giving away more than just a few drops of your blood or saliva. It means giving away precious genetic data — data that is potentially extremely valuable to advancing the careers of researchers, increasing profits for companies, and contributing to better health outcomes for people on a global level. Why, then, should people participate in genetic studies if they’re not going to get anything tangible in return for their data? Even more importantly, why should individuals from populations historically underrepresented in genetic research — many of whom are intimately familiar with the shameful legacy of extractive biomedical practices and the ongoing structural racism and inequalities of healthcare systems around the world — participate in research that brings little obvious benefit to their communities?
[P]eople deserve more than just a pat on the back for contributing to the greater good of science. They deserve concrete benefits, both in the short and long term.
At Variant Bio, we believe that everyone who participates in a genetic study should be fairly compensated for the data they provide, regardless of what we do or do not discover by studying their genes. In other words, people deserve more than just a pat on the back for contributing to the greater good of science. They deserve concrete benefits, both in the short and long term. For this reason, we have developed a unique approach to benefit sharing, one that guarantees benefits for all of our partner communities. In the interest of transparency, the details of our long-term benefit sharing approach can be found in a formal pledge available here. What follows is a brief summary of the information contained in this pledge, as well as additional information on our commitment to short-term benefit sharing.
How much is Variant planning to share?
Plainly put, in the long term Variant pledges to share 4% of revenue (meaning income before expenses, as opposed to profit, which refers to income after expenses) every year with our partner communities until the company is acquired or goes public (completes an IPO), at which point partner communities will receive 4% of the company’s equity value.
Additionally, for every project we partner on, we will dedicate up to 10% of the overall project budget (up to a maximum of USD $100k per project) to short-term benefits for our partner communities.
While it is difficult to put a concrete dollar-amount “value” on the data we collect, we settled on 4% of revenue (plus 4% of the company’s equity value should we get acquired or go public) based on the average amount of royalties (payments) that American universities get from companies in exchange for access to early technology. 4% is in fact a groundbreaking number, and up until now, no genomics, pharma, or biotech company has ever come close to this amount.
4% is in fact a groundbreaking number, and up until now, no genomics, pharma, or biotech company has ever come close to this amount.
At the end of the day, Variant will need to invest a great deal of money and time in order to develop successful new drugs based on the data we collect from research participants. What is more, we expect that only a subset of our projects will lead to a potential drug candidate, and even then only some of the drugs that enter clinical trials are likely to ever succeed. Still, we are committed to sharing the same amount of benefits with every single community that participates in studies with us, regardless of the outcome of those studies.
How will benefits get distributed?
Both short- and long- term benefits will be distributed to non-profit, preferably locally run organizations that support local capacity-building, infrastructure, education, healthcare, and/or sustainable development initiatives in our partner communities. Long-term benefits will be distributed on an annual basis, while short-term benefits will be distributed once, upon completion of a project.
For every project, we will seek input from our partner communities on what causes to support.
For every project, we will seek input from our partner communities on what causes to support. Ultimately, the choice of where short-term benefits go will be decided by Variant Bio together with our local research partners, and the choice of where long-term funds go will be determined by a Benefits Sharing Committee consisting of Variant Bio members and representatives nominated by our partner communities.
Which projects qualify for benefits?
All projects, small and large, qualify for Variant’s short-term benefits. Moreover, with the exception of pilot projects (test projects to determine if we can move forward to conduct a larger project), all projects considered “active” — meaning those where we successfully enroll enough participants to proceed to sample sequencing, and where at least 80% of participants remain enrolled in the study — qualify for long-term benefits. For a project to qualify for either short- or long- term benefits, data transfer between Variant and local research partners must be complete.
In the end, we believe that our approach to benefit sharing is as innovative as it is ethical. To our knowledge, this is the first time a genomics company is implementing a benefit sharing program of this kind. Consequently, it is still a work in progress, and we welcome all feedback and suggestions as we continue to iterate and refine the program.