As the nation prepared for the 46th presidential inauguration, a piece of legislation that could help solve a major problem in clinical research was quietly signed into law.
The bill, the Henrietta Lacks Enhancing Cancer Research Act, aims to address the chronic lack of racial diversity in clinical trials of cancer drugs. It was sponsored by the late civil rights champion Rep. Elijah Cummings (D-Md.)
Named in honor of the now-famous Henrietta Lacks, the act requires a study of barriers to participation for populations that are underrepresented in cancer clinical trials.
Lacks was a 31-year-old mother of five who was diagnosed with aggressive cervical cancer in 1951. During the course of her diagnosis and treatment, her cells were obtained and used for research without her knowledge. The cell samples, which proved remarkably durable, were reproduced continuously and became a major asset to research on cancer and other serious diseases.
The practice of taking or using patients’ cells without their consent is now illegal, but Lacks’ experience provides yet another example of why members of the Black community often mistrust medical science. This skepticism likely contributes to their underrepresentation in research. But it’s undoubtedly not the only reason.
A recently-published study in JAMA Oncology assesses the diversity of 230 clinical trials that led to oncology drug approvals between 2008 and 2018. It found “suboptimal race representation,” especially among Blacks and Hispanics. “Increased efforts are needed to enhance minority representation and eliminate these disparities,” asserted the authors.
The low rates of minority representation in research are even more disturbing because minorities have higher rates of cancer as compared to whites. In fact, Black people in the United States experience the highest rates of cancer death of any racial or ethnic group.
It’s too soon to know what process will be used to conduct the newly-required study, or if it will include an opportunity for public comment. But there is no question about the need to better understand the breadth of barriers to minorities’ research participation – and what can be done to help overcome the obstacles.
Doing so will mean more comprehensive data, better treatments and improved health outcomes for patients. It’s a fitting tribute to Henrietta Lacks, who herself has already given so much to advance the health care of so many.