Nearly half a century after Henrietta Lacks’ family discovered in the 1970s that her cells had been replicated without her consent before her death in 1951, and then widely proliferated and used in some of the most groundbreaking scientific discoveries in recent history, they’re still fighting to gain control of their ancestor’s genetic material—and, in turn, their own.
Lacks’ estate, overseen by her grandson Ron Lacks, filed a lawsuit (PDF) against Thermo Fisher Scientific on Monday, arguing that the medtech giant has continued to reproduce and sell Lacks’ HeLa cells without seeking or securing her family’s consent or sharing the profits with them.
Thermo Fisher is profiting off the stolen tissue samples, the lawsuit claims, despite the broad publicity that Lacks’ story has received in the last decade and its link to a long tradition of discriminatory practices in medicine, as Lacks was a poor, Black woman.
Her family also noted that with the wide availability of Lacks’ genetic material, “some of the most private information about Ms. Lacks and her family has been exposed to the general public.”
“Thermo Fisher Scientific’s choice to continue selling HeLa cells in spite of the cell lines’ origin and the concrete harms it inflicts on the Lacks family can only be understood as a choice to embrace a legacy of racial injustice embedded in the U.S. research and medical systems,” they wrote in the lawsuit. “Black people have the right to control their bodies. And yet Thermo Fisher Scientific treats Henrietta Lacks’ living cells as chattel to be bought and sold.”
Lacks’ family is requesting a jury trial for a single charge of unjust enrichment. It’s seeking repayment from Thermo Fisher in the form of “the full amount of its net profits obtained by commercializing the HeLa cell line.”The filing lists a dozen of Thermo Fisher’s currently available product lines that make use of HeLa cells and notes that it also uses Lacks’ genetic material in its contract development and manufacturing services for other biotech and pharma companies.
“Thermo Fisher Scientific’s business is to commercialize Henrietta Lacks’ cells—her living bodily tissue—without the consent of or providing compensation to Ms. Lacks’ Estate. All the while, Thermo Fisher Scientific understands—indeed, acknowledges on its own website—that this genetic material was stolen from Ms. Lacks. Thermo Fisher Scientific’s business is nothing more than a perpetuation of this theft,” the family wrote.
“Put simply, because it made the conscious choice to profit from the assault of Henrietta Lacks, Thermo Fisher Scientific’s ill-gotten gains rightfully belong to Ms. Lacks’ Estate,” they argued.
Lacks’ family is also seeking a permanent order that would prevent Thermo Fisher from using the cell line in any way without their express permission, as well as the establishment of a constructive trust managed by the estate that would take ownership of all HeLa cells and related intellectual property and proceeds currently owned by Thermo Fisher.
Unbeknownst to her, Lacks’ tissue was biopsied by cell biologist George Gey while she was under anesthesia and undergoing treatment for cervical cancer at Johns Hopkins Hospital in 1951. After discovering that the HeLa cells could be repeatedly reproduced and survived longer than others he’d examined, Gey began sharing the “immortal” cells with other scientists and even harvested more from Lacks’ body after her death later that year—again, without her family’s knowledge or any compensation to them.
In the ensuing decades, the HeLa cell line was used to validate the first polio vaccine and develop human papillomavirus vaccines. Lacks’ cells have been used in tens of thousands of studies, spanning cancer, AIDS, in vitro fertilization, radiation and more, and were also key to the creation of gene-mapping techniques that led to the Human Genome Project.
Her family wasn’t informed about the HeLa cells’ vast usage and outsize impact on medicine until 1975. Even so, they weren’t given any control over the cell line’s usage until 2013, when the HeLa genome was fully sequenced, raising major privacy concerns in its potential to expose the family’s genetic risks and predispositions.
At that time, the Lacks family came to an agreement with the National Institutes of Health through which researchers hoping to study the HeLa genome will receive controlled access to that information only after being vetted by a group comprising physicians, scientists, a bioethicist and two members of the family. They’re also asked to acknowledge Lacks and her family’s contributions in any resulting publications.
The agreement stopped short of offering the Lacks family any share of the profits the researchers, their sponsors and other medtech and pharmaceutical companies ultimately make from the results of that research.