Esteban Burchard is pissed. He’s angry that people of color are being sidelined by a medical revolution spawned by the Human Genome Project. He’s angry that when non-white scientists apply for federal dollars to try and turn things around, they find the deck stacked against them. And he’s angry that he, a middle-aged Latino man with a wrestler’s build, can’t walk his dogs without getting stopped by the police.
That happened a couple of months back, after Burchard had a heart procedure and was told by his doctor to take things easy. “I’m walking my dogs. I had a hoodie on. I got pulled over by two fucking cops, in my own neighborhood,” Burchard told BuzzFeed News last week, from his laboratory at the University of California, San Francisco.
Marquitta White, a postdoctoral researcher in the lab, lightened the mood. “He has little fluffy froo-froo dogs,” she said, starting to laugh.
Burchard regained his composure, and got back on message: “I know I’m going off on a tangent here, but it’s all interwoven.”
Burchard, White, and their colleagues sat down with BuzzFeed News to talk about their latest findings on asthma in black children — which have revealed that previous studies, mostly of people with European ancestry, have almost nothing to say about genetic susceptibility to asthma among black Americans.
That’s a problem, particularly when pharmaceutical companies are looking to people’s DNA, and how that makes them susceptible to disease, to find targets for tomorrow’s drugs — especially for a condition that is twice as likely to kill black people.
Burchard wants to see more scientists of color at the lab bench to ensure that their communities’ priorities become priorities at the cutting-edge of medical research. But by calling for more genetic studies in non-white populations, Burchard and his colleagues have grasped a lightning rod. Given the shameful history of race, genetics, and medicine, some scholars worry that searching for genetic differences between racial groups is a recipe for more discrimination, not less.
“People accuse me of reifying race,” Burchard said.
Burchard, the son of a single mother, grew up in a mostly poor community in San Francisco’s Mission District, where Latinos and blacks lived side by side. “I’m Hispanic. My role models were black men,” Burchard said.
In his lab, a photo of Martin Luther King hangs near framed covers of top scientific journals featuring the group’s research. There’s a second MLK portrait in his office, and a poster signed by another black role model, three-time world wrestling champion Lee Kemp. (On his UCSF online profile, Burchard lists his own wrestling honors alongside academic achievements and media appearances.)
While climbing the academic ladder from his undergraduate days at San Francisco State University, Burchard was drawn to studies of the health problems affecting members of his own community. Scientists of color tend to study populations of color, he said. “It’s a no-brainer.”
Asthma affects different Latino populations to vastly different extents. More than 18% of children of Puerto Rican ancestry are diagnosed with the disease — the highest rate of any group in the United States. Mexican-Americans, meanwhile, are the least affected, with the asthma rate running at less than 5%.
Burchard has built his career studying how genes and environmental factors like air pollution help explain these differences. One big difference between Puerto Ricans and Mexicans is the extent to which African ancestry is part of the genetic mix. Black Americans are nearly as prone to asthma as Puerto Ricans, with a rate of more than 14%. So in 2006, Burchard started to recruit black children, recording their symptoms and variations in their DNA, for a project he called the Study of African-Americans, Asthma, Genes, and Environments, or SAGE.
Still, the project wouldn’t come to fruition for another eight years, when White, a black population geneticist who grew up in Washington, D.C., joined the lab. When she started, she was surprised that no one else in the lab had yet done an analysis of the data on black children.
Seriously? White thought, realizing she could blaze her own scientific trail. The project’s ultimate goal of improving asthma treatments for black kids also hit close to home: Four of her five nephews have asthma.
White found that just 5% of the genetic variants previously linked to asthma in white kids played a similar role for black children. Now she is studying why some kids respond well to the rescue inhalers used to relieve asthma, while others don’t, looking for differences in the DNA sequences of good and poor drug responders in black, Mexican, and Puerto Rican children.
But by recruiting people into genetic studies according to their self-described race, Burchard and his colleagues have come under fire from other scholars who are worried about a scientific legacy that has persecuted people of color, rather than advancing their interests.
Michele Goodwin, director of the Center for Biotechnology and Global Health Policy at the University of California, Irvine, told BuzzFeed News that she is concerned that genetic studies will divert attention from the health problems caused by environmental pollution, which disproportionately affects poor neighborhoods.
“There’s an audience that’s very willing to reduce all of this to genetics, which says, ‘We don’t really need to do anything because they’re genetically predisposed to these kinds of things,’” Goodwin said.
White finds such criticisms frustrating. “I’m a scientist. I’m a woman. I’m an African-American,” she said. “The message should be that people are equal, but they’re not all the same. It’s OK to see differences.”
“We can’t bury our heads because we’re afraid of what people will do with the data,” Burchard added.
Burchard knows that some people will twist the meaning of his research. In 2003, after publishing a commentary arguing that biomedical researchers should pay attention to race and ethnicity, Burchard remembers getting a chilling phone call from David Duke. America’s best known white supremacist wanted to discuss spurious claims about the genetics of crude racial stereotypes — like money hoarding in Jews.
But Burchard points to the blockbuster blood-thinning drug Plavix, used to treat patients at risk of heart attacks or stroke, as a warning of the dangers of ignoring differences in genetic ancestry. Based on studies in Europeans, just 2% of people seemed to carry a DNA variant that prevented their bodies from converting the drug into its active form. But it turns out that the variant is carried by up to 45% of Asians and up to 77% of Pacific Islanders. And in 2014, Hawaii’s attorney general sued the drug’s manufacturers, Bristol-Myers Squibb and Sanofi-Aventis, for failing to disclose that, for almost one-third of the state’s population, Plavix wouldn’t work.
The genetic variant that makes some people fail to respond to Plavix isn’t a simple racial marker. Although the marker arose in Southeast Asia, human migration means that it has spread, at lower levels, through many other populations.
What matters, White said, is people’s ancestry at this one small part of the genome. “It’s not just Asians,” White said. “It’s anyone who happens to be ‘Asian’ right there.”
Burchard is embarrassed to have sat on the data on black kids with asthma for so long. “It’s not for a lack of interest in African-Americans,” he said. “It has been extremely difficult to get this funded.”
Eleven times, he submitted a proposal to the National Institutes of Health (NIH), the federal agency that spends more than $30 billion on biomedical research each year. Eleven times, it was turned down. The only reason he kept collecting data is because he had the backing of UCSF’s wealthy donors, and was able to divert money from other grants.
After this experience, Burchard and his colleagues decided to shine a light on the NIH’s record for diversity. Sam Oh, a Korean-American epidemiologist in the lab, submitted a Freedom of Information request to the agency, asking for funding rates for scientists by race.
What he found was dispiriting. In an increasingly competitive environment, all researchers have found it harder to get funding. But over three decades, scientists of color have been less successful in their grant applications than white scientists — and the gap isn’t narrowing.
“There’s a consistent underfunding of minority scientists,” Oh told BuzzFeed News.
National Institutes of Health data shows that grant applications from underrepresented minorities — including blacks, Latinos, Asians, Native Americans and Pacific Islanders — are less likely to be funded.
This funding bias comes on top of a lack of diversity in science. In 2014, just 4.6% of Ph.D.s awarded in biological and biomedical sciences went to black students, and 6.4% went to Latinos — even though these groups represented 12.6% and 16.9% of the U.S. population, respectively.
When Oh’s analysis was published late last year, it made waves. The leading scientific journal Nature weighed in: “These disparities are not only unjust; they harm scientific and medical progress by shutting off funding to deserving scientists, and ultimately harm society and patients who would otherwise benefit from these scientists’ ideas.”
No wonder, then, that clinical research continues to overlook the health of people of color. Since 1993, when Congress specifically instructed the NIH to include more non-white patients in clinical research trials, less than 5% of studies on lung disease backed by the agency have reported that they had done so. And less than 2% of more than 10,000 NIH-backed cancer research trials have focused on these populations.
Burchard blames bias in NIH’s “study sections” — panels in which scientists who have won grants meet to decide which new grant applications should be made top priorities for funding. Projects proposed by scientists of color tend to get ranked lower.
This “peer review” is central to the way that science works. But when the peers are mostly white, it’s easy for bias to creep in. “We have biased study sections, biased reviewers, biased scientific outcomes,” Burchard said.
To try to confront that bias from the grassroots, Burchard is recruiting promising college and high school students from diverse backgrounds with little lab experience and setting them to work shoulder-to-shoulder with doctors and Ph.D. scientists.
New recruits to Burchard’s lab get a personal introduction to the mosaic of human genetic ancestry. Each gets a DNA analysis by the company 23andMe — which provides a view with the genome painted in different colors according to which broad geographic areas the DNA variants first cropped up in, eons ago.
BuzzFeed News asked Maria Contreras, a Mexican-American undergraduate at San Francisco State University who works part-time in Burchard’s lab, what she learned. “It told me that the colonists came through Mexico,” she shot back, before talking about the wider implications: “It made me realize how medicine needs to change, because everyone really is different.”
Contreras is one of several young scientists in the lab. They include 16-year-old Oona Risse-Adams, who is still at high school yet played a leading role in White’s study of asthma in black kids.
Contreras was another co-author of the study, and joined the lab after White came to talk at San Francisco State. “This lab really spoke to me in that they managed to tie social justice to science,” Contreras said. “I come from those communities that are mostly marginalized.”
Contreras’s parents brought her to San Francisco when she was 12, and are part of an immigrant labor force that keeps one of America’s wealthiest cities functioning — her father cleans planes at the airport; her mother cooks and cleans in a child day care facility.
Contreras said that it was daunting, at first, to be thrown into lab meetings and asked to explain her work to experts who’ve been studying asthma for years. But now she finds it empowering. “I kind of know what I’m talking about,” she said.
Burchard is counting on that, and on his protégés bringing their communities’ health needs to the top of the research agenda. “It allows us to move the needle of science toward social justice, and that’s a beautiful thing.”
Burchard was stopped by the Danville Police, not the San Francisco Police.
Peter Aldhous is a Science Reporter for BuzzFeed News and is based in San Francisco. His secure PGP fingerprint is 225F B2AF 4B8E 6E3D B1EA 7F9A B96E BF7D 9CB2 9B16
Contact Peter Aldhous at firstname.lastname@example.org.
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