How Black People's Participation In Lifesaving Scientific Research Can Help Us All
You don’t have to wait for someone to let you in. You can just show up.
March 22, 2022 at 3:24 pm
COVID-19 has spotlighted old problems and raised new questions. And in light of everything this global pandemic has reminded and taught us, many people are nurturing new ideas for the future — in our working lives, our relationships, our communities and elsewhere. That includes me.
As a Black man and scientist, I am intimately familiar with the ways America’s healthcare system has failed people of color, both during COVID-19 and long before. Yet I’ve also been astonished by the pace of scientific progress during the pandemic. So I, too, find myself envisioning a new future — one where biomedicine finally delivers its full benefits for all people, including Black people.
The need is urgent. In the United States, Black people are at higher risk for a wide range of diseases. We are more likely to die of those diseases. And in many cases, we are less likely to benefit from treatments. That is true for conditions like heart disease, and it is true for conditions like asthma, where even the most popular drug doesn’t work as well for Black kids.
There are, of course, many causes for these disparities, but the one I think about most is how Black people are systematically excluded from the biomedical research process. Black men may have the highest risk of developing lung cancer, for example, but when scientists do research to understand the disease and develop new treatments, they’re performing 95% of studies on people of European ancestry. The numbers aren’t much better for drug or vaccine trials.
We’re often told that this is because Black people don’t trust the medical system; we’re choosing not to participate in research. In some cases, there’s a grain of truth to that claim. Scientific progress has long been entangled with structural racism, and you need only look as far as the Tuskegee experiment to see how the clinical setting was built, in part, by anti-blackness.
Yet that’s far from the full story — and as someone who works closely with biomedical researchers, I’m convinced that the problem has less to do with the people volunteering, and more to do with the systemic and stubborn exclusion of Black folks in research studies. I can’t tell you how many times I’ve heard brilliant scientists say that they just couldn’t find any Black study participants — even in diverse cities like Boston, where more than one in four people are Black.
Poor study design compounds the problem. Sometimes, Black people are invited to the table, only to be pushed away by a time-consuming patient referral process or restrictive participant criteria.
These failures are obviously bad for Black people and bad for science. When our understanding of human biology reflects just a small slice of humanity — namely middle-aged white men — there’s no way we’re going to get a complete picture of our genetics, our cells or the extraordinarily different ways that disease can manifest in our bodies. This hurts all people, Black and white alike.
I’ve dedicated my career to helping solve these problems. At the Chan Zuckerberg Initiative, where I am a program manager for our single-cell biology programs, I work to support researchers who value and convene diverse participant cohorts. And our approach is effective: when we make inclusion of people from historically excluded communities a requirement for funding, scientists are incentivized to get creative and recruit participants that fully represent the impacted communities.
What I really want you to know, though, is that you don’t have to be a Black scientist to make the future of medicine Blacker and brighter. And you don’t have to wait for someone to let you in. You can just show up.
That’s what I did in 2021 when I decided to donate one of my kidneys to someone who needed it. I also contributed a small tissue sample from the organ and a blood sample to the Human Cell Atlas. It’s an open, international scientific project that aims to create a reference map of every cell type in the human body — and now, my cells make up a small part of it.
I donated because I want to advance the science I’m passionate about and improve the lives of the people I love. Over time, scientists will use the Human Cell Atlas to reveal the most basic mechanics of cellular biology — and those insights will light the way to better treatments and therapies for all kinds of diseases. The more people who contribute, and the greater their diversity, the faster progress we’ll make.
What’s more: because I’ve made this donation, I suspect other scientists are going to have a much harder time telling me that they can’t find any Black people to enroll in their studies. I’ll be sitting right in front of them. In this way, my participation in research as both researcher and research subject is my superpower — one that can pave the way for a new standard in research.
Almost anyone can help accelerate this research. That said, it’s not always easy to show up in spaces Black people have been historically excluded. But when we aren’t being invited to participate in science, democracy or any other institution, we can invite ourselves to participate and take those steps together. That’s how we can build a better future — for us, by us.
That can mean donating a kidney, but it doesn’t have to. You can register to donate bone marrow, check the organ donor box when you renew your driver’s license, and check to see if you’re able to donate blood. You can also ask your doctor if there’s a clinical trial you can participate in, or sign up to take part in research studies. Any of these decisions can make an enormous difference, especially for young Black people who stand to gain the most from scientific research.
Our histories are rich with proactive participation. Across the Black diaspora, we improvise to care for one another and create new worlds. Now is the time to embrace science as another tool to carry out that work — and to create the future we deserve.