Henrietta Lacks’ descendants seek compensation

Henrietta Lacks died 70 years ago, but her cells live on. Known as HeLa cells, they are foundational to scientific research, generating both money and medical breakthroughs for the institutions and companies that use them.

But her family members say they’ve been cut out of the deal. A group of Lacks’ descendants filed a lawsuit on Monday, the anniversary of her death, against biotechnology company Thermo Fisher Scientific, claiming it has profited from her cells despite knowing she didn’t consent to their use or sale.

The case of the HeLa cell line illustrates a perennial tension between privacy rights and scientific research. Lacks, an African American woman, went to Johns Hopkins Hospital for treatment in the 1950s. Researchers there discovered that some of her cells had unique properties that allowed them to survive and replicate indefinitely, even outside of her body. Lacks died on Oct. 4, 1951, of cervical cancer. The unique properties of the cells made them valuable to researchers, and courts now must decide how to weigh the scientific benefits against the claims of her family.

Shortly before Lacks died, scientists removed some of the unusual tissue from her tumor without getting permission to use her cells in research. The ability of scientists to replicate and use nearly identical human cells across many studies laid the groundwork for stronger research and new breakthroughs. Scientists have used HeLa cells in genetic mapping and research into polio and COVID-19.

The harvesting of Lacks’ cells occurred before solid protocols existed regarding consent for medical and scientific research. While Johns Hopkins says it never made money off of HeLa cells, other companies have patented particular uses. The family members in the lawsuit argue that ongoing profit—which hasn’t gone to Lacks’ descendants—is part of “a racially unjust medical system.” Family attorney Christopher Seeger suggested he may file similar lawsuits against other companies.

“The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history,” the lawsuit says. “Indeed, Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition. Various studies, both documented and undocumented, have thrived off the dehumanization of Black people.”

Although it is not standard practice for researchers to compensate people for use of their tissue, the lawsuit asks the court to force Thermo Fisher Scientific to give any profit made from the HeLa cells to Lacks’ estate and to stop using the cell line without the estate’s permission.

Journalist Rebecca Skloot dug up much of what is now known about the history of Henrietta Lacks and the HeLa cells for her  bestselling book The Immortal Life of Henrietta Lacks. In a 2010 Q&A with Smithsonian magazine, she said the story was “more subtle and complicated” than just “a racist white scientist doing something malicious to a black woman.” But she also said the scientific community has something important to learn from the situation.

“So much of science today revolves around using human biological tissue of some kind. For scientists, cells are often just like tubes or fruit flies—they’re just inanimate tools that are always there in the lab,” she said. “The people behind those samples often have their own thoughts and feelings about what should happen to their tissues, but they’re usually left out of the equation.”