Henrietta Lacks Family Files 2nd Lawsuit Over Stolen Cells

BALTIMORE, MD — The family of Henrietta Lacks, a Black woman whose cervical cancer cells were taken without her consent more than 70 years ago, has filed a second lawsuit against a pharmaceutical company, accusing it of selling and mass producing the cells for profit.

The lawsuit was filed in U.S. District Court in Baltimore against California-based Ultragenyx Pharmaceutical, a company that develops treatments for serious rare and ultrarare genetic diseases. The lawsuit accuses the company of using Lacks' cells for "unjust enrichment" despite knowing the cells had been taken without her consent.

The complaint comes nearly two weeks after the family settled a similar lawsuit with biotechnology company Thermo Fisher. Attorney Ben Crump, who represents the Lacks family, announced the lawsuit Wednesday.

"The enduring legacy of Henrietta Lacks should be one of acknowledgment, respect, and restitution, not continued exploitation by companies like Ultragenyx," Chris Seeger, another attorney representing the Lacks family, said in a statement. "Their actions stand as a grim reminder of America's history of medical racism and the urgent need to rectify these past wrongs."

Lacks, who was from Baltimore County, died at 31 and was buried in an unmarked grave. A poor tobacco farmer from southern Virginia, she was raising five children when doctors at Johns Hopkins discovered a tumor in her cervix and saved a sample of her cancer cells collected during a biopsy.

The cells taken from Lacks became the first human cells to be successfully cloned, according to a report from The Associated Press. Now called HeLa cells — a line using the first letters of Lacks' first and last names — they have enabled numerous scientific and medical innovations, including the development of the polio vaccine, genetic mapping, and even COVID-19 vaccines.

HeLa cells were discovered to have unique properties. While most cell samples died shortly after being removed from the body, Lacks' cells survived and thrived in laboratories. This exceptional quality made it possible to cultivate her cells indefinitely — they became known as the first immortalized human cell line — making it possible for scientists anywhere to reproduce studies using identical cells.

The discovery and the science involved were detailed in a 2010 bestselling book, "The Immortal Life of Henrietta Lacks." Oprah Winfrey portrayed her daughter in an HBO movie based on the book.

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

According to the lawsuit, Ultragenyx sought intellectual property rights to products made with the cells.

"Ultragenyx's choice to continue utilizing HeLa cells despite the cell line's origin and the concrete harm it inflicts on the Lacks family can only be understood as a choice to embrace a legacy of racial injustice embedded in the U.S. research and medical systems," Crump said.

He added, "Like anyone else, Black people have the right to control their bodies. Just as Ultragenyx takes advantage of Henrietta Lacks' immortal cell line, they also take advantage of vulnerable individuals with rare illnesses by price gouging them for essential treatments."

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. After the recent settlement, Crump said the Lacks family was planning to file more lawsuits.

The Associated Press contributed to this report.