U.S. Rep Cummings Introduces Henrietta Lacks Enhancing Cancer Research Act
After recent a best-selling book-turned-movie detailed her story, Henrietta Lacks’ extraordinary impact on cancer research (https://voice.ons.org/stories/the-story-of-henrietta-lacks-sheds-light-on-ethical-considerations-in-genetic-testing) continues to become common knowledge to more people.
However, many more are still unaware of how her story, struggle with cancer, and tumor cells changed the face of cancer care. For that reason, Representative Elijah Cummings (D-MD), along with a congressional delegation from both chambers, introduced legislation to both honor her role in history and improve access to medical research to traditionally underrepresented groups.
“Henrietta Lacks changed the world, and millions of people have benefited from her remarkable HeLa cells and their contributions to medicine,” Cummings said. “However, while the cell line became famous, the woman who provided it was not recognized—a disparity that is wrong, and sadly affects far too many women of color.”
The 2019 Henrietta Lacks Enhancing Cancer Research Act will help to address access barriers facing minority, low-income, and other underrepresented groups when it comes to enrolling in federally funded clinical trials.
“This bill not only honors the life and legacy of Henrietta Lacks, it also builds on her legacy by directing the Government Accountability Office to closely examine and report on the considerable disparities that still exist in federally funded clinical trials,” Representative John Sarbanes (D-MD), cosponsor on the bill, said. “We must ensure that underrepresented communities are equally represented in clinical trials so that lifesaving cancer treatments and remedies are accessible to all Americans.”
In the 1940s, during Lacks’ treatment for cervical cancer, samples of her tumor were used to create cell lines, known as HeLa, without her or her family’s knowledge or consent. Incredible breakthroughs were derived from her tumor samples—not just in cancer, but for HIV/AIDS, leukemia, polio, and Parkinson disease—but her contribution has been overlooked for decades. The legislation would publicly acknowledge her role and provide access to research trials for many more.