A Need for Diversity in Research

In honor of Black History Month, several 23andMe researchers participated in a two-day event in honor of Henrietta Lacks and her contribution to science.

On top of honoring Henrietta’s life, the event was also intended to draw attention to the need for more diversity in medical research. Estimates are that people of color make up only five percent of participants in medical research. That has a very real impact on healthcare because a person’s ancestry plays a role in how they respond to different drugs or their risk for certain conditions.

On the second day of the event, this disparity was brought into focus by a scientist from the University of California San Francisco and her research regarding childhood asthma.

Marquitta White, PhD, a researcher in Prof. Esteban Burchard’s lab, noted that socioeconomic and environmental differences do not fully explain why African American and Puerto Rican children are more likely to die from asthma. Part of the difference in outcomes may be because children of color respond differently to albuterol, the most commonly prescribed medication for asthma. Currently, there are few studies that look at how people of non-European ancestry respond to the drug or their specific risks for asthma.

The need to change that is a message that resonates with us here at 23andMe, where it has always been our mission to help people — all people — access, understand, and benefit from the human genome. Everyone should benefit from the scientific insights we learn through research. That means people of all ethnicities. But that hasn’t happened because research — not just 23andMe research, but all biomedical and genetic research — has been hampered by a lack of diversity.

Over the years, 23andMe has had several initiatives to improve the representation of people of color in genetic research. Programs such as 23andMe’s Roots Into the Future project that was designed to study the genetics of diseases impacting African Americans have helped so that we now have tens of thousands of people of color who have consented to participate in research. We’ve also worked on an NIH-funded project to develop a new way to detect disease-causing genetic variants among ethnically mixed populations, an African Genetics Project, and more recently 23andMe began an African-American Sequencing Project. The data from this project will be made available for qualified researchers conducting important health studies through an NIH database.

Finally, our most recent effort is a Global Genetics Project, which aims to enroll at least 5,000 participants from populations around the world within two years. The data will be mainly used to trace global ancestry and human-migration history, but it could also guide health research in under-represented groups.

We still have a lot of work to do, but we hope that these initiatives will help 23andMe expand its own reference data sets, improve the ability of our scientists to study groups who are currently underrepresented in genetic research, and reveal new insights. Beyond what this can do for our own research, this will also help qualified researchers with whom we collaborate to conduct studies within some of these communities.  

You can learn more about what we’re doing to improve diversity in research here.