Could precision medicine advance the goals of racial equality?

One of the leaders of President Obama’s precision medicine initiative thinks so. 

Eight-year-old Denaeyah Smith reads out loud to herself from a colorful poster above her head on the exam room wall, entitled “What triggers your asthma?” When she talks, she sounds a bit out of breath.

She’s soft-spoken, alert, and loves to read. She’s also had asthma for as long as she can remember. Several weeks ago, just after a big birthday party—complete with ponies and a bouncy house—she was hospitalized with an acute attack.

“Um, like it’s scary and it’s hard… You have to stay in the hospital for looong and take lots of medicines,” she says shyly.

Now she’s here for a follow-up visit with nurse practitioner Kimberlee Honda, director of San Francisco General Hospital’s pediatric asthma clinic. Honda listens to Smith breathe, asks her some questions about school, and talks to her mother about logistics for getting an asthma inhaler placed in Smith’s 3rd grade classroom.

Smith is considered a “high risk” patient here because she has a history of severe asthma attacks. But she’s also at greater risk simply because she’s black. African Americans are 34 percent more likely than white Americans to have asthma, and they are three times more likely to die from it.

“Asthma rates differ dramatically by race and ethnicity,” says Esteban Burchard, a doctor and researcher at the University of California San Francisco.

Burchard found that a gene associated with asthma severity was almost twice as common in blacks as whites. And that might not be all. He says his lab has shown that people of different races respond differently to the commonly used asthma medication, albuterol.

“Based on that fact alone,” says Burchard, “it suggests to us that there are wide swaths of the population that are using a medication that largely does not work for them.”

But, he says, the problem is that most medical studies have historically excluded people of color.

“Research has focused in on populations that are easy to recruit,” Burchard says, “and those tend to be white patients. They tend to be the most affluent. They tend to have the most access and they mirror the characteristics of the people doing the research.”

Burchard isn’t the first to recognize this problem.

In 1993, Congress passed a law that mandated the National Institutes of Health to include women and minorities in all clinical research. But Burchard—suspecting the NIH had largely failed in this effort—co-authored a report looking at respiratory health studies for the two decades since that law was passed. He found that the numbers got better for the inclusion of women. But not for people of color. Fewer than 5 percent of studies included patients from racial or ethnic minority groups.

According to Burchard, that’s not only a “social travesty” but also a “missed scientific opportunity.” Because just as some diseases operate differently in men and women, he says, they can operate differently based on race or ethnicity. He wants to change the demographics of future studies to learn more about these differences. And he just might be able to. He’s one of 15 people on President Obama’s advisory team for Precision Medicine, a $215 million initiative the White House announced earlier this year.

Precision medicine is a relatively new field that uses combined advances in genomics, medical technology, and big data to help target treatments based on a patient’s type of disease, lifestyle, environment, and DNA.

To advance this work, the President’s initiative plans to recruit at least one million people nationwide who are willing to share their health data with researchers for over a decade. How that million-person cohort is going to look, says Burchard, is unclear. It will be overseen by the NIH, which could bring up challenges from the past when it comes to including diversity.

“But for precision medicine,” says Burchard, “we are trying to right the ship.”

That’s important for the future of racial equality in asthma treatment. Sally Wenzel, director of the University of Pittsburgh’s Asthma Institute, says we already understand that African Americans—and possibly Puerto Ricans, tooare more likely to have a type of asthma that develops at a very early age and causes severe allergic reactions. But, unlike Burchard, she’s not sure yet whether race and ethnicity determine a persons response to existing asthma medications like albuterol.

“I think we’re a little too early to make those types of statements,” Wenzel says. “We just need to understand the underlying molecular biology whatever your racial ethnic background is.”

She agrees with Burchard that clinical studies need to include more diversity. And her own research reflects it. Even though African Americans make up roughly 15 percent of the US population, Wenzel’s asthma study cohorts are at 30 to 40 percent African American because, she says, “we feel that there’s an enhanced need to study African Americans in relationship to severe asthma.”

There are still big challenges to recruiting racial and ethnic minorities into clinical research. Kimberlee Honda says her patients, who are mostly non-white, already juggle a lot in their daily lives. So when it comes to convincing them to participate in a study, she wonders, “How does that actually make sense to a family who has spent 3 hours to get to this clinic and..has food insecurity issues and doesn’t really know how to navigate from one clinic appointment to the next and has multiple children at home with asthma and are getting medications confused and the parent doesn’t really have time to give the medications. How does that become a priority for them?”

But for some, it has.

Back in the exam room, Denaeyah Smith’s mother Verna Stitt, says she’s just enrolled her daughter into a study at UCSF designed specifically to improve asthma treatments for African Americans. “If they can help her not have all these attacks,” Stitt says. “Anything to try to help her. Because it’s scary.” Smith was already on the medication that will be used in the trial. So if the study will help her daughter in the process, Stitt says, “why not try to help someone else?”

And that’s the idea. If Burchard’s precision medicine team can consistently reach families like this over the next few years, they may be building a long overdue bridge between the medical research establishment and the people who need it most.