Trillions of her cells have played a pivotal role in medical research for the past 60 years, but Henrietta Lacks’s story was virtually unknown until it became the subject of a best-selling book in 2010 and an HBO movie starring Oprah Winfrey seven years later.
On Monday, the family of the Black tobacco farmer, who died in 1951, filed a federal lawsuit accusing Massachusetts’ most valuable company of unfairly profiting off her cells.
Thermo Fisher Scientific, a Waltham-based maker of lab equipment and materials, is only “the first of many” the family plans to sue for unjust enrichment, Christopher Seeger, a member of the family’s legal team, said on Tuesday.
Lacks’s cells were taken by Johns Hopkins University in 1951 during treatment of a cancerous tumor, and eventually used in medical research to create a cell line named after her, HeLa (pronounced hee-la). It is the most prolific and widely used human cell line in biology, critical to the treatment of AIDS, hemophilia, influenza, leukemia, Parkinson’s disease, and sickle cell disease, as well as the creation of the polio vaccine and research on the effects of zero gravity in outer space.
More than 100 corporations have profited from using the HeLa line, and Seeger said the estate plans to file several more claims in the next few weeks.
“There are some people running these companies that weren’t even alive when she died, but our view is that they are profiting from stolen genetic material,” said Seeger, who helped negotiate a landmark $4.85 billion settlement with the drug maker Merck in 2007 for heart attacks and strokes linked to the arthritis pill Vioxx.
Thermo Fisher, which has a market value of more than $226 billion, did not respond to repeated requests for comment.
Ron Lacks, a 62-year-old grandson of Henrietta Lacks, said Tuesday that his mother learned that scientists had been using her mother-in-law’s cells from a professor in the mid-1970s. But the wider world didn’t discover the extraordinary story until Rebecca Skloot wrote “The Immortal Life of Henrietta Lacks,” a gripping tale of ethics, race, and medicine.
“We’ve felt that everyone besides the Lacks family has been profiting off the HeLa cells,” said Lacks, a retired Baltimore truck driver and executor of Henrietta Lacks’s estate, who attended a news conference Monday outside US District Court in Baltimore after the suit was filed. “We just wanted to take control back of the HeLa legacy.”
His grandmother’s cells were harvested and grown long before the advent of consent procedures used in medicine today. “I think Henrietta’s cells have touched everything in medical science,” said Lacks, who wrote a book about his grandmother that was published a year ago.
In 2017 Ron Lacks’s father, Lawrence Lacks, told the Baltimore Sun that he wanted compensation from Johns Hopkins University in Baltimore, where the cancerous cells from Henrietta Lacks’s cervix were excised and cultured without her knowledge, and possibly other institutions for the unauthorized use of her cells.
Johns Hopkins says on its website that it “has never sold or profited from the discovery or distribution of HeLa cells” and that it offered them “freely and widely for scientific research.”
Ron Lacks said the family met with several lawyers in the Baltimore area in recent years about a potential lawsuit but nothing came of it. “They were in Johns Hopkins’s backyard and they didn’t want to be involved,” he said.
The situation changed this year, he said, when he was introduced to Ben Crump, a civil rights lawyer in Washington, D.C., who represented George Floyd, Michael Brown, and other Black men killed by police. At the news conference Monday, Crump skewered Thermo Fisher for continuing to market products that use HeLa cells years after their origin had become well known.
“It is outrageous that this company would think that they have intellectual rights property to their grandmother’s cells,” Crump said, according to an Associated Press account. “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?”
The 15-page lawsuit named a dozen Thermo Fisher products that use HeLa cells, including some the company sells to pharmaceutical firms to test potential cancer-fighting drugs in laboratories. The complaint doesn’t specify how much Thermo Fisher makes from the products but notes that the company reported $32.2 billion in revenue last year.
Although HeLa cells have enriched Thermo Fisher, the suit said, Lacks’s estate and family “haven’t seen a dime.”
The suit faces several legal hurdles, according to Reuben Guttman, a Washington, D.C., plaintiffs’ lawyer who has represented whistleblowers in lawsuits against pharmaceutical companies. He was dubbed “the lawyer pharma loves to hate” in a 2015 STAT headline.
Maryland has a three-year statute of limitations on filing claims of unjust enrichment, Guttman said. Thermo Fisher could ask for the suit to be dismissed because Lacks’s family has known for far longer that the company was selling products that use HeLa cells.
Thermo Fisher could also argue that the Lacks family has failed to sue an “indispensable party,” Johns Hopkins Hospital, and that the suit should be dismissed unless the hospital is named a defendant, Guttman said. A Hopkins researcher, Dr. George Gey, obtained Lacks’s cells before she began undergoing radium treatments for cervical cancer in 1951. She died of cancer later that year.
In addition, Thermo Fisher might argue that it didn’t even exist when Lacks received treatment at the hospital. Thermo Fisher’s roots date to 1902 when it was founded in Pittsburgh and originally called the Scientific Materials Co. It underwent multiple mergers and acquisitions over the next century but didn’t become Thermo Fisher Scientific until 2006, with the merger of Thermo Electron and Fisher Scientific.
Nonetheless, Guttman said Thermo Fisher would be taking a “very, very cold approach” if it tried to get the suit tossed on legal grounds. He said the company should negotiate a settlement with the Lacks family.
“I would take this as invitation to do some public good,” he said.
Seeger, the lawyer for the Lacks estate, brushed aside the legal impediments cited by Guttman. “I’ve got a pretty long history suing pharmaceutical companies,” he said.
He also said that the estate may still sue Johns Hopkins if the hospital doesn’t help the plaintiffs in the Thermo Fisher litigation.
“Their conduct will very quickly decide whether they’re going to be a defendant in this case or a witness,” said Seeger, whose office is in Ridgefield Park, N.J.
Although Henrietta Lacks’s cells have played a central role in medical research, she came from the most humble of backgrounds. She was the great-great-granddaughter of a slave and toiled as a tobacco farmer. In January 1951 she went to Johns Hopkins Hospital, where she had given birth to her fifth child only a few months earlier, complaining of a painful “knot on my womb,” according to Skloot’s book.
A hard mass was found in her cervix, and a small piece of the malignant tissue was cut off and taken to Gey’s pathology lab for a diagnosis. Unlike most cancer cells that die within a few days after removal, her cells thrived, doubling within 24 hours and never stopping. Years later, a factory was set up to mass-produce the cells at a rate of about 6 trillion a week.
The National Institutes of Health reached an agreement with members of the Lacks family in 2013 that required scientists to apply to the government agency for access to genetic data derived from her tumor. The agreement also asks scientists who use or generate full genetic data from HeLa cells to include in their publications “an acknowledgement and expression of gratitude to the Lacks family for their contributions,” according to the NIH.
Jonathan Saltzman can be reached at firstname.lastname@example.org.