Immortal Cells, Ongoing Legacy: Lacks Family Pursues Justice Against Biotech Giant

A Maryland federal judge has ruled that biopharmaceutical company Ultragenyx must face a lawsuit from the heirs of Henrietta Lacks.

As the judge explained

Over 70 years ago, Henrietta Lacks, a Black woman from Baltimore County, Maryland, entrusted doctors at Johns Hopkins Hospital with the treatment of her cervical cancer. She was admitted to a segregated ward and placed under general anesthesia. Then, without her knowledge and without any medical basis, doctors cut out samples of her cervical tissue and seized her cells. A few months later, her cancer ended her life. She was buried in an unmarked grave.

Yet the end of Henrietta Lacks’ life was not the end of her story. As it turned out, her cells could replicate indefinitely under the right conditions. As a result, the “immortal” cells that now bear her name—HeLa cells—have enabled scientists around the world to conduct breakthrough medical research that has saved the lives of countless people Henrietta Lacks herself never knew.

The story is told in Rebecca Skloot's nonfiction book The Immortal Life of Henrietta Lacks, a New York Times bestseller.

The Henrietta Lacks estate is represented by her grandson, Ron L. Lacks. He claims these HeLa cells also have made some pharmaceutical companies a lot of money, which is rightly due to Henrietta Lacks’ family.

In August 2023, Ron Lacks sued Ultragenyx for unjust enrichment. The company moved to dismiss the complaint for failure to state a claim.

The judge denied the motion.

The judge noted that

That seizure of Henrietta Lacks’ tissue had nothing to do with treating her cervical cancer. Id. Its purpose was to advance the research agendas of two white doctors at Johns Hopkins: Dr. Richard Wesley TeLinde and Dr. George Gey. …

TeLinde, the hospital’s chair of gynecology, wanted cervical cancer samples he could use to justify his notoriously aggressive treatment techniques by showing that the cancer he targeted was as deadly as other forms of cancer….

Gey, the hospital’s head of tissue research, wanted samples of human tissue he could use to cultivate a cell line—a culture of cells with a common lineage and uniform makeup—capable of reproducing indefinitely under laboratory conditions….

Normally, cell samples die after they are removed from the human body. …Cultivating a cell line that could survive would enable scientists to study them and conduct experiments that would otherwise be impossible…. Gey styled himself “the world’s most famous vulture, feeding on human specimens almost constantly.

Together, said the judge, the doctors devised a plan:

Surgeons under TeLinde’s supervision would take tissue samples from Black women with cervical cancer in the segregated wards at Johns Hopkins Hospital without the women’s knowledge or consent.

As the judge noted,

The HeLa cell line became the foundation for countless medical research projects. Id. HeLa cells enabled—and still enable—transformative breakthroughs, from the polio vaccine to in vitro fertilization to treatment for sickle cell anemia. …Henrietta Lacks’ contributions to medicine are incalculable.

However, Johns Hopkins tried to keep the origins of the HeLa cell line secret.

Ultragenyx is a pharmaceutical company that develops drugs to treat “orphan diseases”—diseases that impact so few people that developing treatments is typically not profitable.

Ultragenyx’s drug development is focused on gene therapy, which depends on the manufacture of adeno-associated virus (“AAV”) vectors. These vectors deliver genetic material into cells that enable them to produce therapeutic proteins. Ultragenyx uses HeLa cells to grow AAV vectors and has developed a proprietary HeLa cell platform.

As the judge explained,

Lacks claims that Ultragenyx has been unjustly enriched by its acquisition, use, and sale of HeLa cells. To remedy this alleged unjust enrichment, Lacks seeks disgorgement of Ultragenyx’s net profits from its commercialization of HeLa cells it acquired or possesses, a permanent injunction barring Ultragenyx from using these HeLa cells without the Estate’s permission, and a constructive trust in favor of the Estate on all HeLa cells in Ultragenyx’s possession, related intellectual property, and proceeds related to its use of the cells.

The judge noted that question is not whether Ultragenyx has been unjustly enriched by its acquisition and use of HeLa cells. The question is also not whether Lacks’ allegations are true. The question is whether, if what Lacks alleges is true, it is plausible that Ultragenyx is liable to Lacks for unjust enrichment. The answer to that question, said the court, is yes:

Under Maryland law, a claim for unjust enrichment has three elements: (1) a benefit conferred upon the defendant by the plaintiff, (2) an appreciation or knowledge by the defendant of the benefit, and (3) the acceptance or retention by the defendant of the benefit under such circumstances as to make it inequitable for the defendant to retain the benefit without payment of its value.

The judge found that Lacks properly pled the three elements of the claim.

The court noted that the first element was properly pled because:

Lacks identifies two putative benefits conferred: the HeLa cells that Ultragenyx acquired and the money that Ultragenyx has made from its commercial use and sale of HeLa cells.

The Restatement (Third) of Restitution and Unjust Enrichment provides a pertinent illustration:

Patient consults Doctor for treatment of a rare blood disorder. Doctor recognizes that certain characteristics of Patient’s blood cells make them unusually valuable for research purposes. Without request or disclosure to Patient, Doctor retains the blood samples taken from Patient on subsequent visits and sells them to interested researchers, realizing a total of $25,000. Doctor’s decision to examine samples of Patient’s blood is medically appropriate; the same amount of blood would have been drawn from Patient in any event; and Patient suffers no physical injury from Doctor’s activities. By the law of the jurisdiction, Patient cannot maintain an action for conversion of blood or other tissue removed from his body for medical purposes. . .. Patient may recover $25,000 from Doctor by the rule of this section.

The second element was properly pled because Ultragenyx has acknowledged its possession of HeLa cells repeatedly.

As to the third element, said the court:

The facts as Lacks alleges them resemble three fact patterns in which it is prima facie inequitable for a defendant to retain the possession of a benefit conferred by the plaintiff without paying its value: when the defendant acquires a benefit wrongfully taken from the plaintiff in violation of their property rights, when the defendant acquires a benefit wrongfully taken from the plaintiff in a breach of fiduciary duty or confidential relationship, and when the defendant acquires a benefit in consequence of tortious or otherwise actionable interference with the plaintiff’s legally protected interests

Notably, similar arguments about unjust enrichment are also being made by the plaintiffs in cases against generative artificial intelligence (GAI) companies, who argue that their copyrighted works are being used without their permission to train AI tools and thus enrich the GAI companies.