Feb 25, 2021 - Inside 23andMe

Hope, Healthcare, and Black Lives

By L. Okey Onyejekwe Jr., MD, JD,  23andMe’s Vice President of Healthcare Operations and Medical Affairs

Why did we need a separate month for Black history? I’ve answered this question many times and heard it asked many times more. At its most innocuous, it’s a silly question. Yet it’s a dangerous one regardless of intent. For one, the health disparity data points that I’ll be reflecting on below—sobering by any account—won’t surprise you. You know them, at the very least by implication. Black people between 18 and 50 are two times more likely than whites to die from heart disease, and Black children are eight times more likely to die from asthma, etc.

I couldn’t shock you with the data even if I delivered it with lightning. Indeed, the implications of this question go far beyond “history.” So rather than trying to wow you with sobering statistics, or dignify the question with an answer, I thought I’d share why I’m unusually hopeful as we conclude this Black History Month.

A Reservoir of Hope

The perspectives I share here are those of a healthcare provider who happens also to be Black. Being Black in America requires drawing on an endless reservoir of hope of what could be, and not what is.

So hope is not new for me, even though the events of the past year tested that outlook. I saw a Black man murdered by police officers—his agonizing transition from a full life all the way to death captured on camera for eternity. I cried because he’s a son, and I have sons. I raged because it happened again, and I told you—we all have been telling you—that it would. But mostly I despaired at the fact that I know—we all know—that justice will not be served once again. That’s always the most painful part.

Then there was the Black man killed by white racist civilians for JWB (jogging while black). The killers got to go home and have dinner with family that evening, no questions asked, and for months afterward. And of course, there was the young woman, murdered by police in her own home. She’ll never get to write about her own experience as a Black healthcare professional. As always, no one will face justice for it. And there was so much more.

So how is it possible that I have any hope as a father of a boy who’s so full of life, another boy who loves running, and a daughter who too aspires to be a healthcare professional?

An Inflection Point?

None of this was new to me, to us. The shock, if there was any, didn’t come from us. We’ve been crying out loud over this type of injustice for years. But in 2020, at least for a moment, it seemed like other people cared.

Will it last?  We did see that racism was finally recognized by the AMA and other organizations as a public health threat for the first time ever.  The policy acknowledges that “the primary drivers of racial health inequity are systemic and structural racism” and that “racism and unconscious bias within medical research and health care delivery have caused and continue to cause harm to marginalized communities and society as a whole.” To one desperate to nail down a foundation on something hopeful, this was a hammer. A tool. Something I can actually build with.

Of course, there was another pandemic in 2020, also with disproportionate effects, killing Black people at 1.6 times the rate of white people. Research from 23andMe, the company where I work, found that Black customers who consented to participate in our research are 80 percent more likely than whites to be hospitalized from COVID-19. Beyond that, Black and other underrepresented communities are also much less likely to be included — or are much less willing to participate — in health research. That includes the most recent clinical trials for COVID-19 vaccines.

This kind of disparity is more than just the problem of Black people. It’s a recognized public health problem. In fact, it’s an unacceptable deviation from the standard of care.

Taking Action

The significance of this shift cannot be overstated. Even before the pandemic, there were concerted efforts to take action.

The National Institutes of Health’s All of Us Precision Medicine Initiative is recruiting a million Americans, particularly from underrepresented communities, for genetic health research. The Veteran’s Administration’s Million Veterans Program is doing much the same.

23andMe has spent more than a decade focused on diversifying its research database to improve our study of diseases like Parkinson’s, within all populations. While we still have a long way to go, 23andMe now has one of the largest, if not the largest, groups of African Americans consented to participate in genetic research in the world. But these types of efforts can no longer be optional outliers. They must indeed become the norm if they are to be within the standard of care.

These efforts and others will lead to new insights into human biology, better and more equitable clinical care, and improved outcomes for everyone. But we still have so much more work to do. At 23andMe we pledged to hold ourselves accountable to make improvements to ensure our people, products, and practices are more diverse, equitable, and inclusive.

It’s a pledge we could all make, especially right now. It amounts to doing more than just hoping for change. It means making a plan to change so that everyone benefits from the scientific insights we learn through research, and all of us have the chance for equitable healthcare.

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