by Alexa Spencer
Just one week after the family of Henrietta Lacks reached a historic settlement with a biotech company over its use of Lacks’ cells in their products, the estate is suing a second company for unjustly profiting off of her genetics.
The lawsuit, filed on Thursday in the United States District Court for the District of Maryland, is against Novato, California-based Ultragenyx — a biopharmaceutical corporation “focused on developing first-ever approved treatments for rare and ultrarare diseases.”
The $2.6 billion company is being sued for using Lacks’ cell line to produce adeno-associated virus vector-based gene therapy products without seeking consent from or compensating her family.
Attorney Benjamin Crump, who’s representing the Lacks estate alongside Seeger Weiss partners Chris Seeger and Chris Ayers, says the company is practicing medical racism.
“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,” he said in a statement.
“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.”
According to the legal team, Ultragenyx is aware of the “unethical origins” of the immortal HeLa cell line, stolen from Lacks’ body by doctors without her knowledge or consent.
She was a cervical cancer patient at Johns Hopkins Hospital when the 1951 assault happened. In a racially segregated ward, doctors surgically extracted tissue samples and cultivated them into the first immortal human cell line.
Since her death in 1951, her cell line has been used in countless medical advances, from the study of AIDS to the development of the COVID-19 vaccines. She and her family, however, have received little recognition.
It wasn’t until recently that Lacks’ family saw some justice after winning a settlement against Thermo Fisher Scientific, a $217 billion company.
Ayers announced at a recent press conference that more companies would be up next. Ultragenyx is just the latest to be held accountable.
“Ultragenyx’s decision to profit from Henrietta Lacks’s cells without permission from her family is a glaring example of a biotech company violating ethical boundaries for financial gain,” Ayers said in a statement.
“Ultragenyx understands—indeed, acknowledges on its own website—that the HeLa cells it cultivates for profit today were stolen from Mrs. Lacks. The company’s business is nothing more than a perpetuation of this theft.”
Seeger says it’s time for Lacks’ legacy to change.
“The enduring legacy of Henrietta Lacks should be one of acknowledgment, respect, and restitution, not continued exploitation by companies like Ultragenyx,” he 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. Our lawsuit aims to help the Lacks family reclaim their ancestor’s story and receive the justice and compensation they deserve.”
