In the early 1950s, doctors at Johns Hopkins Hospital collected cells from Henrietta Lacks, a young black woman who had died of cervical cancer. These samples were the basis for polio vaccines, in vitro fertilization, genetic mapping, and other breakthroughs in biomedical research, but the cells were taken without Lacks’ knowledge or consent. Decades later, her case shows why diversity in research participants can benefit medical discoveries and why mistrust characterizes the relationship between communities of color and researchers. This was an example.
Historically, white men have been the main group studied, but this has meant that drugs coming to market may be ineffective or harmful for other groups. I meant it. While there is no comprehensive data on the diversity of research participants today, a 2022 study found that trials that collected racial data (less than half did so) disproportionately affected certain populations. Even in studies of diseases that affect people, we found that the majority of enrollees were still white. group.
An FCB Health New York review of federally registered clinical trials from 2000 to 2020 found that while zero percent of diabetes trial patients were Native American, they were among the most severely affected by the disease. It turns out that it is indigenous communities that are taking the brunt. Similarly, black patients die from heart disease at higher rates than any other race, yet they make up only 3 percent of clinical trial enrollees for this disease.
In early 2023, Dr. Renalda Jones of San Diego Transplant launched Diverse Research to educate marginalized communities about the benefits of participating in clinical trials and help scientists build lasting relationships with communities. Founded Now. The organization’s various programs help participants find clinical trials that fit their needs, help patients understand how trials work, and provide “research allies” who advocate for participants during trial visits. ”.
“To develop a drug that works for everyone, we need to test it in everyone,” Jones says.
