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Minority DNA Has Never Been More Valuable to Health Companies
A growing multiracial population is increasing pressure on bone marrow registries to be less white
It took all of 10 seconds to enroll to become a bone marrow donor — swirling a cotton swab around my mouth to scrape away DNA that could eventually match me with a recipient. I popped the sample back into its tube and mailed my kit to a bone marrow registry that’s urgently seeking multiracial donors.
It’s been two years, and I haven’t heard back. But maybe one day I’ll be of service to another mixed-race person like me.
People of two or more races are uniquely disadvantaged when it comes to bone marrow matching. Blood diseases such as leukemia or Hodgkin lymphoma can be treated by replacing damaged bone marrow with a healthy transplant, ideally taken from a parent or biological sibling. But for many people, immediate family isn’t an option. Registries can potentially provide a match, but it has to be near exact: Patients are most compatible with donors who are genetically very similar.
Ethnic minorities as a whole comprise just 30% of the entries in Be The Match, a nonprofit operated by National Marrow Donor Program, which, with 16 million individuals registered, is the world’s largest and most diverse marrow registry. What’s more, a tiny 3% of its donors self-identify as mixed-race, making us the demographic with some of the lowest odds of finding a match. Multiracial people are among the fastest-growing populations in the U.S., yet in many ways, our systems have failed to account for these changes.
Like consumer genetics platforms such as Ancestry and 23andMe, bone marrow registries exist within a space that is overwhelmingly white and asks minorities to surrender their most personal data. Justifiable fears about how minority DNA data can be used — as a tool for discrimination, for example — may further decrease the proportion of minority people who become marrow donors.
“On the one hand, we’re pushing the need for more diverse populations to participate in genomics research so that our findings are applicable beyond white people,” said Jill Hollenbach, a genetics professor at the University of California, San Francisco School of…
