On Monday, Henrietta Lacks’ estate sued a biotechnology company over allegations that it is selling cells that physicians at Johns Hopkins Hospital took from the Black woman in 1951 without her knowledge or consent.
Lacks died from cervical cancer, and tissue was taken from her tumor before she died in 1951. They were the first human cells to be successfully cloned. Since then, they were infinitely reproduced and became known as a line called HeLa Cells, a very durable line of cells used for scientific research and have become key in modern medicine. The line of cells has enabled a wide range of scientific and medical innovations, including the development of the polio vaccine, genetic mapping and COVID-19 vaccines.
Consent procedures used in medicine and scientific research today didn’t exist when Lacks’ cells were harvested, but attorneys for her family say Thermo Fisher Scientific Inc., of Waltham, Mass., has continued to profit off of the HeLa cell.
“It is outrageous that this company would think that they have intellectual rights property to their grandmother’s cells. Why is it they have intellectual rights to her cells and can benefit billions of dollars when her family, her flesh and blood, her Black children, get nothing?” one of the family’s attorneys, Ben Crump, said Monday at a news conference outside the federal courthouse in Baltimore.
In the 1950s, a group of white doctors at Johns Hopkins preyed on Black women with cervical cancer. They cut away tissue samples from their patients’ cervixes without their knowledge or consent, according to the lawsuit.
For their part, Johns Hopkins Medicine claims it reviewed its interactions and says it “has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line,” but acknowledges an ethical responsibility.
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Johns Hopkins said it never sold or profited from the cell lines, but many companies have patented ways of using them. Crump said these distributors have made billions from the genetic material “stolen” from Lacks’ body.
Another family attorney, Christopher Seeger, hinted at related claims against other companies.
Thermo Fisher Scientific “shouldn’t feel too alone because they’re going to have a lot of company soon,” Seeger said.
The lawsuit asks the court to order Thermo Fisher Scientific to “disgorge the full amount of its net profits obtained by commercializing the HeLa cell line to the Estate of Henrietta Lacks.” It also wants Thermo Fisher Scientific to be permanently enjoined from using HeLa cells without the estate’s permission.
On its website, the company says it generates approximately $35 billion in annual revenue. A company spokesman reached by telephone didn’t immediately comment on the lawsuit.
HeLa cells were discovered to have unique properties. While most cell samples died shortly after being removed from the body, her cells survived and thrived in laboratories. This exceptional quality made it possible to cultivate her cells indefinitely — they became known as the first immortalized human cell line — making it possible for scientists anywhere to reproduce studies using identical cells.
The remarkable science involved — and the impact on the Lacks family, some of whom suffered from chronic illnesses without health insurance — were documented in a 2010 bestselling book, “The Immortal Life of Henrietta Lacks.” Oprah Winfrey portrayed her daughter in an HBO movie about the story. The lawsuit was filed exactly 70 years after the day she died, on Oct. 4, 1951.
“The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history,” the suit says. “Indeed, Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition. Various studies, both documented and undocumented, have thrived off the dehumanization of Black people.”
The current racial climate may work in the favor of Lacks’ family.
A professor of public policy at the University of Michigan said Lacks’ lawsuit comes at a time when the family may very well have a sympathetic audience.
“We are at a moment, not just after the murder of George Floyd but also the pandemic, where we have seen structural racism in action in all sorts of places,” Shobita Parthasarathy, who has researched issues around intellectual property in biotechnology, said. “We keep talking about a racial reckoning, and that racial reckoning is happening in science and medicine, as well.”
Lawrence Lacks Jr., one of Henrietta Lacks’ grandsons, said that the family is “united” behind the case.
“It’s about time,” Ron Lacks, another grandson, said. “Seventy years later, we mourn Henrietta Lacks, and we will celebrate taking back control of Henrietta Lacks’ legacy. This will not be passed on to another generation of Lackses.”