Henrietta Lacks’ Family Sues Ultragenyx for Cell Use Profits

The family of a woman whose “immortal cell line” has led to medical innovations such as the polio vaccine and gene mapping has sued Ultragenyx Pharmaceutical Inc. in federal court.

The biopharmaceutical company made massive profits using materials derived from tissue taken from Henrietta Lacks in the 1950s without her knowledge or consent, her grandson Ron Lacks says in a complaint filed Thursday in the US District Court for the District of Maryland.

The family is seeking a share of the money Ultragenyx made from gene therapies that are used to treat orphan diseases—those affecting a very small number of people, Lacks says. Ultragenyx also has made money by licensing its technologies to other biopharmaceutical firms, he says.

Ultragenyx didn’t immediately respond to Bloomberg Law’s request for comment.

This is the second lawsuit Lacks’ family has filed to force companies to pay for using cells that were taken from Lacks during a surgery she was told was necessary to treat cervical cancer. The family announced a settlement with Thermo Fisher Scientific Inc. in early August.

Henrietta, who was Black, didn’t know White doctors intended to take her tissue during the operation and wasn’t informed when they used her genetic material to develop the HeLa cell platform, Lacks says. The “immortal cell line” has become one of the most important and widely used cell lines in medical history, he says in the complaint.

“The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout American history” who have been “dehumanized” in the pursuit of medical progress, the family says in the complaint.

The family stated one claim for unjust enrichment and is asking the court to order Ultragenyx to disgorge the profits it made using the HeLa line, permanently block the company’s future use of the cells, impose a constructive trust on all cells and intellectual property derived from the cells, and pay costs and attorneys’ fees.

Lacks’ story was told in a 2017 television movie starring Oprah Winfrey, based on the 2010 book entitled The Immortal Life of Henrietta Lacks by Rebecca Skloot.

Ben Crump Law PLLC, Seeger Weiss LLP, and Law Offices of Kim Parker PA represent Lacks.

The case is Lacks v. Ultragenyx Pharm., Inc., D. Md., No. 23-cv-2171, complaint filed 8/10/23.