Henrietta Lacks' family sues Ultragenyx for profiting off 'HeLa cells' without permission
BALTIMORE - The family of Henrietta Lacks is filing a lawsuit against a California-based biotech company for profiting from using the immortal "HeLa Cells" without consent.
The family is being represented by Seeger Weiss partners, Chris Seeger and Chris Ayers, and nationally renowned civil rights attorney Ben Crump in the lawsuit against Ultragenyx.
"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. "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."
Lacks died of cervical cancer in 1951. She had gone to Johns Hopkins for cervical cancer treatment. When her cancer cells were biopsied, doctors realized that instead of dying, her cells doubled every 20 to 24 hours.
Tissue taken from Lacks' tumor before she died of cervical cancer in 1951 became the first human cells to be successfully cloned. The harvested cells are known as HeLa cells.
HeLa cells were discovered to have unique properties. 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 her cells indefinitely.
Over the span of several decades, HeLa cells have 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.
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." Oprah Winfrey portrayed her daughter in an HBO movie about the story.
"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," said Ayers. "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."
A settlement was recently reached in the lawsuit against Thermo Fisher Scientific—a pharmaceutical company that has benefited from the cervical cells of Henrietta Lacks.
Our media partner The Baltimore Banner reached out to Ultragenyx Pharmaceutical for comment, but has not heard back.