Mark Zuckerberg and Priscilla Chan want to address all disease by 2100—and make medical research more diverse in the process

In their bid to achieve this, they have pledged $6.4 billion to science. (The couple plan to give away 99% of their Meta stock over the course of their lifetimes.) Their specific focus is on funding and carrying out pioneering biomedical research, as well as the creation of open-source tools that allow scientists to work more efficiently.

It’s through this work that smaller, supplementary goals have emerged. One is improving the participation of underrepresented groups in science research. An FDA report published last year shows that in 2020 75% of participants in clinical trials for 53 new drugs were white. Chan wants to spotlight another underrepresented group: children. 

“In biomedical research, the majority of our knowledge, our data that comes out of labs, is based on adults of European ancestry,” Chan, a pediatrician as well as the cofounder and co-CEO of the CZI, told me at the Coins2Day Impact Initiative conference in Atlanta last week. The interview was her first after returning to work following the birth of her and Zuckerberg’s third daughter.

“Racial diversity is just one form of diversity,” she said, noting that the CZI has donated $46 million to America’s four Historically Black Medical Colleges to advance inclusion in medical research. “Another that’s very near and dear to my heart as a pediatrician is making sure that we don’t forget kids. Right now, a lot of research doesn’t represent kids and doesn’t tell us about their development and what should be happening as they grow up.” 

To redress the balance, the CZI has been “really intentional about seeding research that…brings in children so that we have information across the spectrum of race and age as we move forward in this really exciting era of science,” she said. 

Another minority group that the organization works closely with is sufferers of rare diseases. (The National Institutes of Health define a rare disease as one that affects fewer than 200,000 people in the United States.) The journey to diagnosis for rare disease patients can be “a place of huge inequity,” Chan explained. The CZI is collaborating with rare disease patient groups to improve access to swift diagnosis and treatment.

“I want this work to be successful. This work is so much bigger than myself or Mark,” Chan said when asked what she hopes her legacy will be. “We wanted to see this work translate to affect patients’ lives. Every time we get to see an example of that—whether it’s seeing cystic fibrosis in a new way, or seeing a rare incurable disease have a new, cutting edge treatment—that’s what gives me life in this work.”

Ellie Austin
[email protected]
@Ellie_Austin_

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PARTING WORDS

"When I look back at my life, I’m happy that I dared to continue to do things. I didn’t intend to do what I did; it was just a calling"

—Model and activist Bethann Hardison on her consistent efforts to bring diversity to the fashion industry