The family of Henrietta Lacks is suing rare disease drug developer Ultragenyx over its use of technology built from her cells, which were taken without her knowledge or consent in 1951 and immortalized into a cell line that’s been widely used in biomedical research since.
The lawsuit, which was filed in the U.S. District Court for the District of Maryland, accuses Ultragenyx of “unjustly enriching” itself by profiting from its use of Lacks’ cells without seeking the family’s permission. The suit comes just after the family settled a case it brought against the laboratory supply and instrument maker Thermo Fisher Scientific.
In 1951, Lacks was treated for cervical cancer at Johns Hopkins Hospital in Maryland. Without informing her, doctors there took cell samples for research, cultivating them into an eternally reproducing cell line that was dubbed HeLa, after Lacks’ name.
HeLa cells became an important research tool and were used to study bacteria and viruses, develop the polio vaccine and probe the human genome. But Lacks, who died at 31, and her descendants never received compensation for her cells’ far-reaching role in science, an injustice that was brought to public attention by the 2010 book “The Immortal Life of Henrietta Lacks.”
In their lawsuit, Lacks’ family claims that, despite Ultragenyx knowing the unethical origins of HeLa cells, the company used them to develop technology to produce adeno-associated viral vectors for its gene therapy research.
“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 the Lacks family’s attorney Chris Ayers in a statement.
A page on the company’s website acknowledges Henrietta Lacks and the unethical collection of her cells, which Ayers noted in his statement. The cell line Ultragenyx currently uses was derived from modified HeLa cells, according to the website.
Ultragenyx did not return BioPharma Dive’s request for comment.
Lacks’ family filed their lawsuit in the same court where they settled their lawsuit against Thermo Fisher. That suit was brought in 2021, and also accused Thermo Fisher of profiting off HeLa cells without permission. The settlement was reached earlier this month, but specific terms were not disclosed.
Ben Crump, a civil rights attorney representing the Lacks family, said after the settlement that the family was planning to file more similar suits.
Ultragenyx currently has several approved biologic and small molecule medicines for a range of rare diseases. It’s developing six gene therapies, all of which use AAV vectors.