How can cancer scientists repair the relationship between research and communities of color?

Communities of color experience the greatest rates of cancer and suffer from the worst outcomes but for decades they’ve been far less likely to be part of cancer research and clinical trials. By and large, science has focused on cancer in people who are white and more affluent.

Technologies like single-cell genomics, immunotherapy, and artificial intelligence have given medicine tools that may transform the future of cancer in this country. But as cancer medicine advances, failing to study diversity might mean missing out on important genes and mutations that may be more prevalent in non-white populations. Unless researchers intervene successfully to include communities of color, science’s greatest strides against cancer may only serve the most privileged members of our society and worsen health inequities.

But the problem is complicated. When researchers try to study health and disease in communities of color, they often run into skepticism and distrust that stems from decades or centuries of abuse and exploitation from the medical establishment. In 1994, for example, a construction crew at Virginia Commonwealth University discovered the bones of at least 53 African American people in an abandoned well, unearthing the medical college’s history of purchasing stolen Black corpses for research or medical training.

In other cases, trust is broken between individuals of color and doctors due to discrimination in health care settings. One often-cited example is a study from the University of Virginia that showed evidence that doctors are less likely to prescribe pain medication to Black patients relative to white patients for the same complaint. Personal experiences of similar discrimination might also add to the distance between people of color and research trials.

The difficulty involved in recruiting diverse participant pools for cancer research isn’t hypothetical, though, as scientists at the University of California, San Francisco have learned. In 2016, a team of UCSF researchers set out to recruit women from all walks of life for a study that they hoped would combine genomics, machine learning and epidemiology to help redefine breast cancer screening in the U.S. They originally estimated it would take a year to recruit 100,000 women for the trial, called the WISDOM study.

Instead, it’s been a five-year journey that’s laid bare some of the divisions between the scientific establishment and communities of color — and some of the ways that relationship can be rebuilt and trust repaired.

Researchers are taking a range of steps, including providing medical care and moving research sites to the communities they want to work with, rather than remaining at large academic centers. Some scientists are taking more radical steps by giving the participants a say in how they want to participate in studies and have their data managed.

The stories I’ll produce, with support from the Impact Fund for Reporting on Health Equity and Health Systems, will look at the efforts to shake up the status quo in cancer research and explore the systemic disparities that have led to inequities in scientific participation. The series will seek to show why so many people of color distrust the medical establishment, an issue that’s contributed not only to disparities in our understanding of cancer across human groups but other medical inequities, including vaccine participation.

And if there’s success in any of the efforts that researchers are taking now, it might lay a blueprint for what more equitable research might look like in the future.