Named after the woman whose cancerous cells were used without permission or compensation to facilitate multiple scientific breakthroughs, the Henrietta Lacks Enhancing Cancer Research Act was passed by the House of Representatives on December 9 and the Senate on December 18. Next, it is headed to the desk of President Donald Trump.
If Trump signs it, the Government Accountability Office will be legally required to produce and publish a report on minority participation in government-funded cancer research trials, according to Fox.
Henrietta Lacks was born in Roanoke, Virginia, in 1920 and died in Baltimore in 1951. Or so her family, including her husband and five children, thought. In fact, Lacks’s doctors at Johns Hopkins Hospital had ensured that her biological identity would endure. Shortly before she died of cervical cancer, they harvested and distributed her cells without her knowledge. In the 70 years since Lacks died, those cells and their descendants, dubbed HeLa cells, have been traveling the world, zipping from hospitals to research laboratories and enabling countless medical advances along the way.
What makes them so special is their immunity to aging and death—in a word, their immortality. Thanks to several mutations, HeLa cells are able to divide rapidly and indefinitely, providing an inexhaustible store of microscopic guinea pigs for professors and scientists conducting research and developing treatments on every continent.
But the circumstances surrounding their acquisition have always been controversial, especially considering that Lacks was a Black woman who spent her entire life in the Jim Crow South and her doctors were white. That controversy was the impetus behind the new bill, which aims to simultaneously honor Lacks’s contribution to medical research and raise awareness of the need for diversity in clinical trials, according to The Baltimore Sun.
Historically, minority participation in such trials has been scant as a result of widespread distrust in the medical establishment—distrust in part fomented by ethically dubious events and experiments, such as the Tuskegee syphilis study and the Lacks case.
In a statement following the news, Lawrence Lacks Sr., Henrietta Lacks’s eldest son, thanked Senator Chris Van Hollen (D–Md.), who, along with late Representative Elijah Cummings (D–Md.), backed the bill from the beginning.
“My mother’s HeLa cells were taken without her knowledge or consent. Her contributions, once hidden, are now being rightfully honored for their global impact,” Lacks said. “As the world celebrates Henrietta Lacks’s 100th birthday this year, it is only fitting that this law builds upon her legacy by ensuring equitable access to advances in cancer treatment for all people.”
The HeLa cell line’s story, and that of their progenitor, was made famous in a 2010 book by journalist Rebecca Skloot and a 2017 movie adaptation. For a quick synopsis, visit the Cancer Health Bookstore. To learn more about how Black perceptions of medicine and health care have been affected by Henrietta Lacks’s case, read “Black Doctors Urge African Americans to Take Future COVID-19 Vaccine.” And to learn more about the current state of racial and ethnic diversity in cancer research, read “Study Finds Lack of Racial Diversity in Cancer Drug Clinical Trials.”