‘Justified Medical Mistrust’ docuseries looks to the past to change the future of clinical trials

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A documentary series aims to shed light on an issue that Black American communities know well: medical mistrust.

“Justified Medical Mistrust: Acknowledging the Past to Change the Future” is a six-part film produced by global nonprofit Cancer Support Community (CSC).

The film was recently presented to an audience at the Pennsylvania Convention Center in Philadelphia for the inaugural CINEHEALTH International Health and Wellness Film Festival.

The film covers medical mistrust among communities of color broadly. But the documentary also highlights how the lack of racial diversity in clinical trials impacts cancer research.

Audrey Davis, senior director of health equity at Cancer Support Community, is a Philadelphia native who served as her father’s caregiver after he was diagnosed with colorectal cancer. Clinical trials were offered as an option, but Davis said her father was reluctant to get involved.

“My dad passed away when I was 24,” she said. “I thought of people like my dad who maybe would have wanted to hear from a trusted source, someone who looks like them, to talk to them not only about what their concerns about clinical trial participation are, but also what the benefits of clinical trials can be for both the individual and also the community.”

Medical mistrust and clinical trials have caused profound harm in Black communities, Davis said. The infamous study of syphilis in Tuskegee, Alabama is one of several controversial examples of medical research involving African Americans, as well as Dr. J. Marion Sims’ — the “father of gynecology” — experiments of enslaved women.

Like Davis, many medical researchers are concerned medical mistrust is leading to large disparities in diversity and ethnicity in disease trials.

In 2022, a report showed that a lack of clinical trial diversity leads to billions of dollars in losses for diabetes and cardiovascular disease research. Similarly, the Food and Drug Administration (FDA) reported that an approved drug for early Alzheimer’s involved clinical trials of fewer than 20% of Black participants.

“If we have lower clinical trial participation rates by a particular group, in this case, African American and Black patients,” Davis said, “then what we’re going to see, not only in terms of having skewed data, is guidelines that are coming out in terms of prevention and screening are also not accurate for these groups.”

Davis also talked about how a lack of racial diversity has direct implications in cancer clinical research.

“If we have certain clinical trials for breast cancer, for example, that are not including enough Black women,” she said. “You’ve now, unfortunately, harmed a very significant group of Black women who tend to get breast cancer at younger ages, especially for certain breast cancer types.”

Lisa Dutton, a patient advocate for Cancer Support Community and a cancer patient herself, is featured in the film. Dutton believes in the benefits of clinical trial participation for communities of color.

In 2016, she was diagnosed with breast cancer. The former Philadelphia resident was encouraged to engage in clinical trials by a friend and physician early in her treatment. She’s now a peer advisor answering questions that communities of color have about clinical trials.

“It’s not like signing up for the Army,” she said. “If it’s a three-month trial or a six-month trial or whatever. But if for any reason you need or want to stop, you can.”

Dutton — a contributor to the “Justified Medical Mistrust” documentary — said that it’s imperative that communities of color consider clinical trials. She said that the benefits go beyond just medical research.

“Clinical trials can be considered anywhere along your path of care,” she said. “From identifying disease to different ways for disease, for behaviors, diet, treatment, exercise, post treatment, evaluation, managing side effects. It’s really something that people should think about.”

Medical professionals acknowledge that facilitating dialogue about clinical trial participation is sensitive.

Dr. Monique Gary, a breast surgical oncologist at Grandview Health in Sellersville, Pennsylvania, says the trust between patient and physician isn’t inherent.

“Not anymore,” she said. “And for the Black community, it probably never was. Just because I’m a Black woman who puts on a white coat does not mean that I’ve automatically garnered the trust of Black patients.”

Clinical trials are the essence of how science moves forward, and Gary said marginalized populations that have been historically excluded must benefit most.

“As a Black woman there is no way that I could practice medicine and not be aware and not be an advocate for a community that is disproportionately suffering because the life I save could very well be my own,” she said.

The CINEHEALTH International Health and Wellness Film Festival, where the six-part film was recently presented, hopes to bring bigger audiences to films that showcase issues around health and wellbeing.

“Our hope is that participants will benefit through the sharing of their content with the larger community, to reach as many people as possible with their message,” said CINEHEALTH Festival director Tracey Yaw, in a statement.

“Our view is that the more people are educated and inspired,” she said, “the less stressful, cumbersome and lonely individuals are when they experience similar situations.”

Support for WHYY’s coverage of health equity issues comes from the Commonwealth Fund.