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Why Minorities Are Underrepresented in Clinical Trials and What Physicians Can Do About It

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October 1, 2020

Bringing trials to participants might improve participation

  • Racial and ethnic minorities are not well represented in studies
  • Lack of insurance and eroded trust are barriers to participation
  • Bringing studies into the community could help reduce disparities
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The idea that racial and ethnic minorities are underrepresented in clinical trials has been well documented. That disparity has meant that cancer therapies are not being tested in the full demographic of people who will one day make use of them in the clinical setting.

Socioeconomic factors are partly to blame. “If you are underinsured or you don’t have insurance, then it’s nearly impossible to go on some of the clinical trials because of what’s billed to insurance,” Dr. Rebecca Arend, gynecologic oncologist at University of Alabama Medicine, tells SurvivorNet.

Also at issue is a lack of trust among would-be participants in minority populations. “If we go back to some of the things that have happened in the early days of clinical trials, there’s been abuse of certain populations,” says Dr. Thomas Herzog, gynecologic oncologist at University of Cincinnati Health. Although notorious trials like the Tuskegee Syphilis Study happened decades ago, the effects of their betrayal persist, generations later. “We’ve built some barriers with certain populations in terms of enrolling in clinical trials.”

Researchers are making inroads into greater inclusivity through a multifaceted approach. One method is to bring the study to the participants. “A lot of the larger institutions are doing what I term the ‘modern-day house call,’” explains Dr. Elizabeth Jewell, gynecologic surgeon at Memorial Sloan Kettering Cancer Center. “Satellite facilities and outreach facilities can become very incredible avenues for access to people who otherwise would not have the ability to enroll in these trials.”

Another tactic is to expand out the clinical trial process to include a phase IV. “You don’t stop investigating the treatment or the new approach to the cancer at the phase III level,” Dr. Dana Chase, gynecologic oncologist at Arizona Oncology, tells SurvivorNet. “You then break it out to the real-world science.”