New Claims Prove the Henrietta Lacks Controversy Is Far From Over

Henrietta Lacks is known as “immortal” for a reason—though she died of cervical cancer in 1951, scientists have used her extraordinary cells countless times since. But the initial cells that started the immortal HeLa cell line were taken from Lacks without her consent or the knowledge of her family. Now, reports Andrea K. McDaniels for the Baltimore Sun, Lacks' family is demanding compensation from the university who first took the cells.

HeLa cells, which never stop dividing, have played a part in some of the most significant modern medical discoveries. Her cells “went up in the first space missions to see what would happen to human cells in zero gravity [and] helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization,” writes Rebecca Skloot in her best-selling book The Immortal Life of Henrietta Lacks.

Skloot helped draw attention to the once-untold story of Lacks and her family, who were not aware that her cells had been used at all until decades after her death. Lacks’ family never received compensation for her cells, and many family members didn’t understand just how her cells had been used. In addition, Lacks’ own name was often obscured and misidentified as Helen Lane.

Things came to a head in 2013. As SmartNews reported at the time, European scientists sequenced and published Lacks’ genome online, also without seeking her family’s consent, and the Lacks family then made an agreement with the National Institutes of Health in the United States. The NIH agreement allowed scientists to use a controlled database of the genome, as long as they agreed to a number of stipulations and also credited Lacks and her family in the acknowledgments sections of their research.

At the time, it seemed like it might be the end of the years-long saga. But now Lacks’ oldest son, Lawrence, says that the agreement is invalid and that he was cut out of the process. McDaniels reports that Lawrence has also accused Johns Hopkins University, which took Henrietta’s cells to begin with, of profiting from her cells and is demanding compensation.

Lawsuits have not yet been filed, and Johns Hopkins vigorously denies Lawrence’s claim. In a statement, the University says that there were no modern consent laws when they took Lacks' cells. The university added: “Johns Hopkins never patented HeLa cells, and therefore does not own the rights to the HeLa cell line. Johns Hopkins also did not sell or profit from the discovery or distribution of HeLa cells." 

The Lacks family, in turn, tells McDaniels that pharmaceutical corporations and other entities have profited from her cells and that they want the cells to be the property of her estate.

“For scientists, one of the lessons is that there are human beings behind every biological sample used in the laboratory,” Skloot told Smithsonian.com in 2010. Whether or not the Lacks family gets the compensation they think they deserve, the ongoing conversation about her cells is part of a larger debate about ethics, privacy and informed consent. It’s been more than 60 years since Lacks’ cells changed medicine forever—and her personal story is far from over.

Erin Blakemore | | READ MORE

Erin Blakemore is a Boulder, Colorado-based journalist. Her work has appeared in publications like The Washington Post, TIME, mental_floss, Popular Science and JSTOR Daily. Learn more at erinblakemore.com.