Medical Studies Are Too White. How Science Is Working to Get Better Data.

Researchers are coming up with new ways to make medical studies less white.

They are building trust in groups long ignored by science and working with doctors and patients of color to design better studies. They are opening research sites in more diverse communities and providing stipends to help people participating in their studies pay for gas and child care.

The efforts are starting to work: More people of color are participating in medical research. That is good news for everyone. Data from clinical trials—used to approve drugs and train artificial intelligence on medical decision-making—until recently failed to include swaths of the population. In the future, more diverse data sets will lead to better treatments and prevention of diseases in people of different backgrounds.

“Without diversity, we lose the ability to address fundamental problems that lead to suffering and loss of life,” said Dr. Carol Horowitz, director of Mount Sinai’s Institute for Health Equity Research.

Horowitz is working with community doctors and patients of color to develop pulse oximeters, devices that measure blood-oxygen levels through a fingertip, for people of all skin tones. The devices were less accurate during the pandemic for some Black, Hispanic and Asian patients, research found.

“It’s a travesty. These are the kinds of things we miss,” she said.

Horowitz and her team are surveying people to find out if they are aware of oximeters’ flaws and working to warn doctors and patients about the devices’ limitations. They are recruiting a diverse group of volunteers to test the new oximeters.

Recently Horowitz and her colleagues also worked with local doctors and parents of color to assemble a more diverse group of families to draw better data from a study assessing the value of genetic sequencing for newborns.

“Researchers are coming down from their ivory towers and saying, we don’t have all the answers. I love that,” said Delante Lee Bess, a Black father who helped design the study.

His daughter had participated in a 2019 study among mostly white, wealthy families that found genetic sequencing in newborns could identify risks for thousands of diseases and that families welcomed that knowledge. The researchers wanted their follow-up study to determine whether families from other backgrounds would participate and find such knowledge useful, too.

Bess and other parents recommended researchers simplify their recruitment materials and hire more recruiters of color. Researchers tossed out their original study design and incorporated many of the parents’ suggestions. Some 40% families who have agreed to participate are Black, about a third are Hispanic and a third have an annual household income of less than $20,000.

Genetic traits inherited from your ancestors can influence your risk for some diseases or how well a treatment works. Geneticists who analyzed some 30,000 cancerous tumors in people of African ancestry in the U.S. found ancestry-related mutations that could influence the aggressiveness of the disease and response to treatments, according to a study published in October in the journal Cancer Cell.

“People used to think that by looking at just one population, we can understand what is driving cancer,” said Jian Carrot-Zhang, a geneticist at Memorial Sloan Kettering Cancer Center and a study co-author. “We’re showing that’s not the case.”

Congress in 1993 required the National Institutes of Health to include more women and people of color in studies. Progress was modest until the nationwide reckoning over race that followed George Floyd’s murder by a police officer in Minneapolis in 2020, said Dr. Steven M. Lipkin, a clinical geneticist at Weill Cornell Medicine in New York City.

“George Floyd’s death was like a light switch,” he said.

Three-quarters of clinical-trial participants in the U.S. are white, down from 84% in 2011. Some 60% of the U.S. population is white. The Food and Drug Administration is preparing guidelines that would require drugmakers to explain how they intend to recruit a diverse pool of patients in advanced clinical trials.

Pfizer said it is opening new clinical-trial sites in diverse areas such as Brownsville, Texas. Johnson & Johnson in October released the results of the first large study of psoriasis, a chronic skin condition, solely in people of color. That data helped confirm that the psoriasis drug Tremfya is effective and safe for patients of all skin tones, the company said.

“Good representation is good science. It really helps all of us,” said Dr. Felix Olale, chairman of MedGenome, a genetic-research company that collects genetic data from blood tests performed at hospitals and doctors’ offices in some 35 countries. Drugmakers in the U.S. are using some of that data to develop treatments for rare diseases, Olale said.

Researchers can’t traipse into communities that have been neglected or exploited by doctors and expect to be welcomed with open arms, said Dr. Donald Warne, co-director of the Johns Hopkins Center for Indigenous Health. He advises researchers who want to work with indigenous communities to first build relationships with elders and community health workers.

“The messenger really matters,” he said.

Ayanna Molina, 49, had been skeptical of organized medicine in part because of her own work as a therapist. Molina’s patients in New Orleans included many people like herself: Black women with post-traumatic stress disorder. Their stories of being ignored by doctors corroborated her own mistrust of the medical system.

“Clinical trials haven’t been fair to Black people,” she said.

But when she fell into a suicidal depression in 2020, she learned of a clinical trial that intrigued her. Researchers were studying MDMA, a mood-altering drug known popularly as ecstasy, coupled with therapy to treat PTSD.

Molina said the researchers talked through her concerns and provided about $1,000 for basic expenses and travel to and from her therapist’s office. She later learned she was given a placebo, but the intensive therapy and the support she received were transformative.

“It was such a tender experience. I felt very safe,” she said.

Researchers conducting the study wanted to improve on data from an earlier trial whose participants were mostly white and affluent. Black, Hispanic and indigenous people experience PTSD at higher rates than other groups.

Patients of color told the researchers that reimbursement for lost wages, child care and transportation would help them take part, said Joseph McCowan, a psychologist who helped recruit a more diverse group of patients for the study. The study, published in September in Nature Medicine, showed that MDMA-assisted therapy alleviated PTSD symptoms.

“Without intention, things just remain as they are,” McCowan said.

Write to Dominique Mosbergen at dominique.mosbergen@wsj.com