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Henrietta Lacks family can sue over use of immortal 'HeLa' cells, judge rules

The new ruling out of Maryland could set up her descendants for another large settlement, this time from California bioscience firm Ultragenyx.

Members of the family of Henrietta Lacks stand near Kadir Nelson's painting of her in the National Portrait Gallery in Washington in 2018. (LacksFamily/X)

The family of Henrietta Lacks has claimed another victory for their late ancestor and against medical overreach. A Maryland judge ruled this week that a lawsuit can proceed against the California-based Ultragenyx Pharmaceutical, Inc., which for years has profited from Lacks’ famous “HeLa” cells without compensating her descendants.

The decision from U.S. District Judge Deborah Boardman came on May 20, stating that the multibillion-dollar company may be liable for unauthorized use of the immortalized DNA of Lacks, who died of cervical cancer in 1951 at the age of 31.

“The family of Henrietta Lacks is grateful for the judge’s important decision to deny Ultragenyx’s baseless motion to dismiss the case and allow the lawsuit to move forward,” said attorneys Ben Crump and Christopher Seeger, whose firms filed the original 2023 suit against Ultragenyx.

Ultragenyx sought to halt the lawsuit on the grounds that it came too long after Lacks’ passing and that the company was merely a third party to the initial discovery and acquisition of HeLa cells—which took place at the hands of researchers at Johns Hopkins Hospital in Baltimore.

Lacks died within 8 months of her diagnosis and was largely forgotten as her HeLa cells became a gold standard in medicine. Lacks’ sister, Alice Henry, has said that Lacks was a “devoted” Catholic, though she was buried in her native Virginia in a then-unmarked grave near her family’s Baptist church. 

As she faded into obscurity, companies began studying and profiting from her cells—which possessed a unique resilience that has proved immensely useful for medical research. They have since been sold and developed in various forms, including by Ultragenyx.

“Over seven decades ago, doctors at Johns Hopkins Hospital removed tissue from Henrietta Lacks’ cervix without her knowledge or consent,” wrote Judge Boardman in her opinion.

“If what [Lacks’s family] alleges is true, it is plausible that Ultragenyx is liable to Lacks for unjust enrichment. For the reasons explained in this opinion, Ultragenyx’s motion to dismiss is denied.”

Boardman’s ruling marks the latest turning point in her legacy, which has become popular knowledge in the past three decades. Most recently, a 2010 book from Rebecca Skloot, “The Immortal Life of Henrietta Lacks,” became a New York Times Best Seller, and an Emmy-nominated film soon followed from (and starring) Oprah Winfrey. In 2020, Lacks was posthumously inducted into the National Women’s Hall of Fame.

Lacks’ family’s legal battle against the medical establishment gained steam following her national ascendence, with her descendants arguing in court that her cells should never have been used—no less sold or mass-produced—without her consent. At the time of her illness, Lacks was not even informed that her DNA could be collected and commercialized by scientists.

Her family’s 2021 lawsuit against the Massachusetts-based biomedical firm Thermo Fisher Scientific ended with a settlement last summer, the amount of which remains confidential. The company had previously attempted to dismiss the legal action before coming to the table for negotiations.

Ultragenyx will likely face a similar decision in the coming months, even as the 14-year-old international company reels from other legal troubles. 

In December, they agreed to pay $6 million in damages after being accused by the Department of Justice of defrauding Medicare and Medicaid. A separate investigation this year concerns potential self-dealing by the company’s board of directors—an accusation Ultragenyx has also faced in the past.

Lacks’ family’s lawyers have signaled that their legal triumph this week will likely lead to a significant payout.

“This historic ruling is not only a victory for Henrietta Lacks’ family; it presents an opportunity to correct a monumental wrong,” said Crump and Seeger. “We invite Big Pharma to the table to resolve this on behalf of Henrietta Lacks’ family.”

Nate Tinner-Williams is co-founder and editor of Black Catholic Messenger.

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