Henrietta Lacks’ family reaches a deal with a biotech company that used her cells without consent

BALTIMORE — More than 70 years after doctors at Johns Hopkins Hospital took Henrietta Lacks’ cervical cells without her knowledge, a lawyer for her descendants said they have reached a settlement with a biotechnology company that they accused of reaping billions of dollars from a racist medical system.

Tissue taken from the Black woman’s tumor before she died of cervical cancer became the first human cells to continuously grow and reproduce in lab dishes. HeLa cells went on to become a cornerstone of modern medicine, enabling countless scientific and medical innovations, including the development of the polio vaccine, genetic mapping and even COVID-19 vaccines.

Despite that incalculable impact, the Lacks family had never been compensated.

Lacks’ cells were harvested in 1951, when it was not illegal to do so without a patient’s permission. But lawyers for her family argued that Thermo Fisher Scientific Inc., of Waltham, Massachusetts, continued to commercialize the results long after the origins of the HeLa cell line became well known. The company unjustly enriched itself off Lacks’ cells, the family argued in their lawsuit, filed in 2021.

The settlement came after closed-door negotiations that lasted all day Monday inside the federal courthouse in Baltimore. Some of Lacks’ grandchildren were among the family members who attended the talks.

Attorney Ben Crump, who represents the family, announced the settlement late Monday and said the terms are confidential.

In a joint statement, Thermo Fisher representatives and attorneys for the Lacks family said they were pleased to resolve the matter and declined to comment further on the agreement.

A poor tobacco farmer from southern Virginia, Lacks got married and moved with her husband to Turner Station, a historically Black community outside Baltimore. They were raising five children when doctors discovered a tumor in Lacks’ cervix and saved a sample of her cancer cells collected during a biopsy.

Lacks died at age 31 in the “colored ward” of Johns Hopkins Hospital. She was buried in an unmarked grave.

While most cell samples died shortly after being removed from the body, her cells survived and thrived in laboratories. They became known as the first immortalized human cell line because scientists could cultivate them indefinitely, meaning researchers anywhere could reproduce studies using identical cells.

The remarkable science involved — and the impact on the Lacks family, some of whom had chronic illnesses and no health insurance — were documented in a bestselling book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks,” which was published in 2010. Oprah Winfrey portrayed her daughter in an HBO movie about the story.

Johns Hopkins said it never sold or profited from the cell lines, but many companies have patented ways of using them.

In their complaint, Lacks’ descendants argued that her treatment illustrates a much larger issue that persists today: racism inside the U.S. medical system.

“The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history,” the complaint reads.

In a brief filed in support of the Lacks family, attorneys advocating for civil rights, women’s rights and health care equity said the case is one of many in which U.S. doctors and scientists have exploited minority patients. Another example they cited involved James Marion Sims, a 19th century Alabama surgeon heralded as the father of modern gynecology who performed experimental surgeries on a dozen enslaved women without the use of anesthesia, claiming Black people could endure more pain than white people.

“Indeed, a great portion of early American medical research is founded upon nonconsensual experimentation upon systemically oppressed people,” the attorneys wrote.

In another supporting brief, Southern University law professor Deleso Alford highlighted the discrepancy in status and financial stability between Lacks’ descendants, including grandson Ron Lacks who wrote a book in 2020, and the medical professionals profiting off her cells.

“In the same year Mr. Lacks was self-publishing a book in the hopes of finding some help for his family, the CEO of Thermo Fisher received a compensation package of over $26 million,” the brief says.

Thermo Fisher argued the case should be dismissed because it was filed after the statute of limitations expire. But lawyers for the Lacks family said that shouldn’t apply because the company is continuously benefiting.

In a statement posted online, Johns Hopkins Medicine officials said they reviewed all interactions with Lacks and her family after the publication of Skloot’s book. While acknowledging an ethical responsibility, the statement said the medical system “has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line.”

Though her relatives hadn’t received financial compensation, they reached an agreement with the National Institutes of Health in 2013 that gave them some control over how the DNA code from HeLa cells is used.

Crump, a civil rights attorney, has become well known for representing victims of police violence and calling for racial justice, especially in the aftermath of George Floyd’s murder. The Lacks family joined him Tuesday near Baltimore’s waterfront to announce the settlement and pay tribute to Lacks on what would have been her 103rd birthday. The group brought balloons and a cake to celebrate.

Lacks’ only surviving child, Lawrence Lacks Sr., lives to see justice done, grandson Alfred Lacks Carter Jr. said. Now 86, Lawrence Lacks was 16 when his mother died.

“There couldn’t have been a more fitting day for her to have justice, for her family to have relief,” Carter said. “It was a long fight — over 70 years — and Henrietta Lacks gets her day.”

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