Ultragenyx Sued by Henrietta Lacks’ Family in Second HeLa Cell Line Lawsuit

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After reaching a settlement with Thermo Fisher Scientific earlier this month, the family of Henrietta Lacks is again suing a company. The attorneys for Lacks’ estate filed a lawsuit Thursday against Ultragenyx Pharmaceutical over the use of their matriarch’s immortal cell line. 

The legal complaint accuses Ultragenyx of using Lacks’ body as a “mere manufacturing tool” and staking claim to her genetic material to commercially manufacture adeno-associated virus vectors for gene therapies. The biopharma has reaped “huge profits that would never have been possible without Henrietta Lacks’ cells.” 

The cells in question were taken from Lacks without her knowledge or consent during cervical cancer surgery in the 1950s—a time when it was not illegal to do so. Dubbed the HeLa cell line, the cells were the first line discovered to be immortal, proliferating in the lab instead of dying off. The use of the cells has led to the unlocking of the human genome and played a crucial role in vaccine development, including the COVID-19 shot. 

California-based Ultragenyx focuses on rare and ultra-rare genetic diseases. The company’s technology platforms leverages the HeLa line to produce AAV vectors on a “massive scale” to transport gene therapies. It also uses these vectors to manufacture gene therapies for other companies. Ultragenyx’s website lists partners like Daiichi-Sankyo, Regeneron and multiple universities.  

“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,” said the family’s civil rights attorney Ben Crump in a statement.   

Indeed, many Black Americans have serious reservations about medical research. A 2022 Pew Research Center survey showed 55% of Black Americans felt misconduct by medical research scientists was a moderate or very big problem. 

Thermo Fisher was the first company targeted in court by the Lacks family’s attorneys. Filed in October 2021, the lawsuit was settled earlier this month for an undisclosed amount.  

The Ultragenyx lawsuit charges the company with “unjust enrichment” and “aims to help the Lacks family reclaim their ancestor’s story and receive the justice and compensation they deserve.” In addition to asking the court to reward compensation for the commercialization of the cells, the suit is also seeking to block the company from continuing to use the HeLa line without permission. 

At the time of the Thermo Fisher lawsuit, Crump told NPR the biopharma “shouldn’t feel too alone because they’re going to have a lot of company soon.”  

Ultragenyx has not yet filed a response to the lawsuit.  

Kate Goodwin is a freelance life science writer based in Des Moines, Iowa. She can be reached at kate.goodwin@biospace.com and on LinkedIn.   

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