The Henrietta Lacks Enhancing Cancer Research Act of 2019 (HR 1966 / S 946, 116th Congress) was introduced by Senator Chris Van Hollen (D-MD) on March 28, 2019. The Act seeks to address the underrepresentation of certain populations (e.g., racial and ethnic minorities, older individuals, lower-income individuals, and individuals living in rural settings) in federally funded cancer clinical trials by commissioning a study by the Government Accountability Office (GAO) to understand barriers to participation in these medical trials. The GAO would be required to complete such a study within two years of the date of the Act’s enactment. The study would focus on what steps the federal government has already taken, and what additional steps could be taken, to address barriers to participation in these trials. The report is mandated to focus on those trials that are funded by federal agencies rather than funded by private companies.
The Act is named after Henrietta Lacks, a woman who developed cervical cancer at 31 years of age. Medical researchers harvested samples of her tumor and, without the consent of Henrietta Lacks or her family, propagated these resilient cells into the commonly researched HeLa cell line. By some estimates, the weight of all HeLa cells — which individually weigh next to nothing — ever grown would approach 50 million metric tons. Research conducted using HeLa cells has contributed to new therapies relating to cancer, HIV/AIDS, hemophilia, leukemia, and Parkinson’s disease, and contributed to our knowledge of gene mapping, radiation effects, and zero gravity on cells, among many other notable contributions. According to the Act, her story is one that emphasizes the need for inclusion and bioethics policies to both protect and benefit patients across the US.