Henrietta Lacks' family sues Ultragenyx over use of HeLa cell line

[August 11, 2023]  By Blake Brittain

(Reuters) - The estate of Henrietta Lacks filed a lawsuit in Maryland federal court on Thursday accusing biopharmaceutical company Ultragenyx Pharmaceutical of unlawfully profiting from cells that were taken from Lacks' body without her consent during a medical procedure in 1951.

The lawsuit said that Novato, California-based Ultragenyx, which develops treatments for rare genetic diseases, uses the famous "HeLa" line of cells "like a dairy farm treats cows" to mass-produce materials for gene therapy.

Lacks' estate reached a confidential settlement in a similar lawsuit against laboratory-equipment maker Thermo Fisher earlier this month.

Representatives for Ultragenyx did not immediately respond to a request for comment on the new lawsuit.

The HeLa cells were cut from Lacks' cervix without her knowledge during a cancer-treatment procedure at a Baltimore hospital. The cell line was the first to survive and reproduce indefinitely in lab conditions, and has been used in a wide range of medical research worldwide.

The story of Lacks, a young African-American woman who died of cancer in Baltimore later in 1951, was made famous in Rebecca Skloot's 2010 best-selling book "The Immortal Life of Henrietta Lacks," which became a feature film in 2017.

Thursday's complaint said that Ultragenyx's manufacturing platform cultivates Lacks' cells at a "massive scale" to produce "adeno-associated virus vectors" used in gene therapy to transport genetic material.

The estate said the company receives "tremendous profits from the gene therapies it manufactures for other companies using HeLa cells" in addition to developing its own gene therapies using the HeLa cell line.

"Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition," the lawsuit said.

The estate accused Ultragenyx of unjust enrichment. It asked the court to award it the money that Ultragenyx earned from commercializing the cells and to block the company from continuing to use them without permission.

(Reporting by Blake Brittain in Washington; Editing by David Bario)

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