Henrietta Lacks’ family takes Ultragenyx to court
Ultragenyx, a biopharmaceutical company that develops gene therapies for rare genetic diseases, is facing a lawsuit filed by the family of Henrietta Lacks over the unconsented and uncompensated use of Henrietta Lacks’ cells.
Henrietta Lacks, an African American woman from Baltimore, passed away from aggressive cervical cancer in 1951 at the age of 31. Doctors at the Johns Hopkins Hospital had, without her knowledge or consent, taken some of Lacks’ cervical cells during a biopsy. These cells, named HeLa cells, had an unprecedented ability to survive and reproduce in laboratory culture dishes and became the first immortalized cell line [1].
HeLa cells underpin vast amounts of biomedical research, resulting in key discoveries in many fields ranging from cancer to immunology and infectious diseases. Multiple Nobel Prizes have been awarded to work built on the foundations of HeLa cells, including research relating to the HPV virus, DNA telomeres and microscopy techniques [2]. Despite this, the Lacks Family had, until recently, never been compensated.
The Lacks family has filed an “unjust enrichment” lawsuit, which claims that Ultragenyx has benefitted unjustly at the expense of Henrietta Lacks and her family. Ultragenyx utilizes modified HeLa cells in their Pinnacle Producer Cell Line Platform to produce AAV gene therapies for rare diseases. The Lacks family asserts that Ultragenyx did not seek consent to utilize the HeLa cell line after learning where the cells originated. This occurred in the wake of a similar litigation against Thermo Fisher Scientific (MA, USA), which was settled out of court.
“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 US research and medical systems,” said Ben Crump, attorney for the Lacks family.
At the time of this article being published Ultragenyx had not issued a statement.
Industry updates with Dusko Ilic: July 2023
Read highlights from the July installment of Dusko Ilic’s industry news, which discusses the latest developments and news in regenerative medicine and stem cell research, and is published every month in Regenerative Medicine.