Henrietta Lacks’ Family Can Advance Ultragenyx Cell Use Suit

The family of Henrietta Lacks, a Black woman whose “immortal cell line” has led to medical innovations, such as the polio vaccine and gene mapping, can proceed with its lawsuit against Ultragenyx Pharmaceutical Inc., a federal court ruled Monday.

Henrietta’s grandson, Ron Lacks, says the company has wrongly benefited from tissue taken from Henrietta in the 1950s without her knowledge or consent during a procedure for cervical cancer and hasn’t compensated the Lacks family. Because Henrietta’s cells could replicate indefinitely, “HeLa cells” have gone on to enable scientific breakthroughs in medical research.

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

Judge Deborah L. Boardman, of the US District Court for the District of Maryland, denied Ultragenyx’s motion to dismiss Ron’s unjust enrichment claim against the pharmaceutical company. “The question is whether, if what Lacks alleges is true, it is plausible that Ultragenyx is liable to Lacks for unjust enrichment,” Boardman said in the decision. “The answer to that question is yes.”

The judge rejected Ultragenyx’s argument that the lawsuit is barred by Maryland’s three-year statute of limitations for unjust enrichment claims. Ron doesn’t need to overcome a statute of limitations defense at this stage of the case—and even if he did, he has done so by “plausibly” alleging Ultragenyx wasn’t registered in Maryland when it was required to be, and therefore can’t avail itself of a statute of the limitations defense, the court said.

Boardman also wasn’t persuaded by Ultragenyx’s arguments that the company was too remote from the taking of the cells to be liable to the Lacks family—saying that may factor into a disgorgement of profits calculation but doesn’t overcome a motion to dismiss.

Ultragenyx relies on HeLa cells to develop its medications, Boardman also said.

Henrietta 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, Boardman said.

The doctors who took the tissue from Henrietta “were not unique in seeing Black patients more as ‘clinical material’ than as human beings,” Boardman said, citing other tests on Black people at the time without their consent.

This is the second lawsuit Henrietta’s family has filed requesting that companies compensate the family for using cells taken from Henrietta. The family announced a settlement with Thermo Fisher Scientific Inc. last year.

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. Baker Botts LLP and Baker Donelson represent Ultragenyx.

The case is Lacks v. Ultragenyx Pharm., Inc., D. Md., 1:23-cv-02171, order 5/20/24