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Family of Henrietta Lacks files suit against biotech company for using famous ‘HeLa’ cells without permission

Family members of Henrietta Lacks filed a lawsuit Monday against the U.S. biotech giant Thermo Fisher Scientific accusing the company of “unjust enrichment” for making and selling products that relied on cells taken from her decades earlier without her consent.

The suit, filed at the U.S. District Courthouse in Baltimore, follows years of consideration by family members about how to remedy the treatment of Lacks and Black people generally in medicine and the related financial windfall for pharmaceutical companies.

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The family said in July it had hired prominent civil rights attorney Ben Crump to explore lawsuits against as many as 100 defendants, mostly pharmaceutical companies, and possibly Johns Hopkins Hospital, where the so-called HeLa cells were taken.

“It is outrageous that this company would think that they have intellectual rights to [Lacks’] cells. Why would they have intellectual rights to her cells and can [make] billions of dollars, when her family, her flesh and blood, her Black children, get nothing?” Crump said at a news conference with co-counsels Christopher Seeger and Kim Parker and Lacks’ relatives.

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“Black people have the right to control their bodies,” he said. “And yet Thermo Fisher Scientific treats Henrietta Lacks’ living cells as chattel to be bought and sold.”

Attorneys for the family did not specify how much in damages they were seeking, but Seeger said Lacks’ relatives are owed as much as the company has made in profits using her cells.

Attorney Ben Crump, center, surrounded by four grandchildren of Henrietta Lacks and two spouses, heads to a news conference outside U.S. District Court in Baltimore. From left, Hope and Ron Lacks; Kimberley Lacks; attorney Crump; Alfred Lacks Carter with his wife, Jewel Carter, and Jason O’Neal.
Attorney Ben Crump, center, surrounded by four grandchildren of Henrietta Lacks and two spouses, heads to a news conference outside U.S. District Court in Baltimore. From left, Hope and Ron Lacks; Kimberley Lacks; attorney Crump; Alfred Lacks Carter with his wife, Jewel Carter, and Jason O’Neal. (Amy Davis)

Thermo Fisher Scientific, based in Waltham, Massachusetts, did not respond to requests for comment.

A Johns Hopkins doctor took a sample of cervical cancer cells from Lacks, then a 31-year-old mother from Turners Station, without her knowledge or consent 70 years ago. She died shortly thereafter in 1951. The cells were the first to live outside a body in a laboratory, where they reproduced instead of dying, leading to a host of medical advances in everything from vaccines and cosmetics to in vitro fertilization.

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Monday marked 70 years to the day since Lacks’ death. Hers is the first known “immortalized” cell line in medicine, according to the complaint.

“Thermo Fisher Scientific has appropriated Ms. Lacks’ genetic material for its own pecuniary gain, all without payment, permission, or approval from the Lacks Estate or family,” the complaint says.

“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 US research and medical systems.”

Henrietta Lacks died in 1951 at 31.
Henrietta Lacks died in 1951 at 31. (Courtesy of Dr. Howard Jones / Handout)

The case became well known after Rebecca Skloot wrote the bestselling book “The Immortal Life of Henrietta Lacks,” which was later made into an HBO movie with starring Oprah Winfrey as one of Lacks’ daughters. It is one of the best known examples of medical mistreatment and experimentation in the history of health care, and one of several cases cited by the Black community as a root cause of widespread distrust and resentment of the health system.

Johns Hopkins officials contend that at the time, there was no established practice for consent in such cases or regulation for their use. They also have said they never patented the cells and did not profit from them.

Hopkins officials have worked with some Lacks family members to develop scholarships and other programs to honor her contributions to science. It’s also naming a building on the Hopkins medical campus in East Baltimore after her.

Seeger, a partner at the Seeger Weiss law firm, said it was unclear whether Hopkins would be listed as a defendant in the case or as a corroborating witness.

Asked for a response to the lawsuit against Thermo Fisher Scientific, Hopkins officials sent a reporter a link to a website the institution has created in her honor.

This 2007 photo shows the exterior of Thermo Fisher Scientific Inc. in Waltham, Massachusetts.
This 2007 photo shows the exterior of Thermo Fisher Scientific Inc. in Waltham, Massachusetts. (Stephan Savoia/AP)

The legal team representing the Lacks family alleges that Thermo Fisher Scientific chose to sell and mass produce the living tissue from Lacks, despite knowing she had not consented.

No “reasonable person” working with the HeLa cells could use them without knowing they were extracted without consent, according to the complaint. The attorneys allege that much of Thermo Fisher’s profits are owed to the “immortal” cells.

“This is a lawsuit not just for simple justice, this is a lawsuit not just for social justice, but this is also a lawsuit for genetic justice,” Crump said. “Her cells are the cornerstone of modern medicine. With this lawsuit we seek to make this the cornerstone of a new body of law called ‘genetic justice.’”

The company reported on its website that it generates about $35 billion a year in revenue.

Carl Tobias, a professor of law who specializes in torts at the University of Richmond School of Law and who is not involved in the Lacks’ case, said the legal team has assembled a “creative” argument to advance the family’s cause. But it’s not clear how a judge or jury might approach it, he said, since limited case law exists of similar nature.

“It’s clear something was done that was wrong to [Lacks], and maybe, by extension, to her family members,” said Tobias. “The company’s going to have to come into court and answer for that.”

Seeger said the “unjust enrichment” case is a straightforward one: Thermo Fisher Scientific and others have profited from the actions of Hopkins doctors for as long as they have used the cells in research and development.

“Almost all medicines that have been developed and marketed have been tested on these cells,” Seeger said. “So, every time a company does that with knowledge that they’re working with stolen material, they’re enhancing [the family’s] claim.”

Parker, who runs the Law Offices of Kim Parker in Baltimore, added that “whole industries” have been created from the HeLa cells. Corporations like Thermo Fisher Scientific are being tested and rightfully scrutinized, she said, as a nationwide movement seeking racial justice in all corners of life grows louder.

“It’s unconscionable that they continue to dismiss Black bodies, and Henrietta Lacks unfortunately is only one of many that has been subject to this type of dismissive, abusive treatment,” she said. “What makes Black bodies less valuable than any other life? Why is it that Henrietta Lacks’ life is of no value?”

Descendants of Henrietta Lacks, whose cells have been used in medical research without her permission, say a prayer with attorneys Monday outside the federal courthouse in Baltimore.
Descendants of Henrietta Lacks, whose cells have been used in medical research without her permission, say a prayer with attorneys Monday outside the federal courthouse in Baltimore. (Steve Ruark/AP)

Several members of Lacks’ extended family united behind the attorneys, including four of her grandchildren and one of her great-great-grandchildren, 6-year-old Zayden Joseph. Some wore “Say her name: Henrietta Lacks” buttons.

Crump lifted Joseph into his arms as a reminder that “genetic justice” would ensure that Joseph, his cousins and his future offspring would benefit from their ancestor’s unknowing sacrifice.

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Grandson Ron Lacks, who published his family’s story in his book, “Henrietta Lacks The Untold Story,” said the suit reframes his relatives’ narrative into one they can take pride in and own. It’s not just about the money, he said.

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“We will celebrate taking back control of Henrietta Lacks’ legacy,” Lacks said. “We are going to take back, and take charge, of the Lacks family legacy.”

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