Henrietta Lacks’s “immortal cells” have been the subject of a best-selling book, a TV movie, a family feud, cutting-edge medical research and a multibillion-dollar biotech industry.
Last week, her eldest son and two grandsons announced they plan to file a petition seeking “guardianship” of the cells that were taken without consent from Lacks during a 1951 visit to John Hopkins Hospital. The hospital was racially segregated at the time, and Lacks was an African American woman. There, doctors discovered a malignant tumor on her cervix and collected cells from the tumor without her knowledge or consent, according to a report by Johns Hopkins Medicine titled “The Legacy of Henrietta Lacks.”
“The question we are dealing with is ‘Can the cells sue for mistreatment, misappropriation, theft and for the profits earned without their consent?’” said Christina J. Bostick, who is representing Lawrence Lacks, the eldest son of Lacks, and grandsons Lawrence Lacks Jr. and Ron Lacks.
Lawrence Lacks said the family did not know until many years after his mother died that her cells were living in test tubes in science labs across the world.
Lacks died on Oct. 4, 1951, at 31, but her cells continued to live. Scientists in the lab discovered to their amazement that unlike the cells they had collected in other experiments, which expired almost immediately outside the human body, Lacks’s cells thrived and in fact doubled in growth every 20 to 24 hours, according to a report by Johns Hopkins Medicine.
The line of cells — which scientists nicknamed “HeLa” cells after the first two letters of Lacks’s first and last names — would go on to contribute to significant advances in scientific research, lead to two Nobel Prizes in research, and the development of vaccines, cancer treatments, in vitro fertilization and a genome sequence that was published last year.
“There are 17,000 U.S. patents that involve HeLa cells, which are theoretically continuing to make money,” Bostick said.
In 2017, Johns Hopkins University released a statement denying it had profited from the cells. “Johns Hopkins never patented HeLa cells, and therefore does not own the rights to the HeLa cell line,” the statement said.
Hopkins explained that when the cells were taken from Lacks in 1951, there was no established protocol for informing patients or getting consent for research of cell or tissue specimens.
But scientists across the world have used the cells in research. In 2013, scientists in Germany published a paper announcing they had sequenced the entire genome of a HeLa cell, “essentially putting Lacks’s DNA sequence up on the Internet for all to see,” according to the Guardian newspaper. “Amazingly, they failed to alert anyone in the Lacks family about their intentions or ask their permission.”
That year, in 2013, the National Institutes of Health announced that two members of the Lacks family would sit on the panel that reviews applications for the genome data and would control access to HeLa cells. The agreement did not include financial compensation for Lacks’s descendants.
Because the statute of limitations for medical malpractice expired years ago, Bostick said, she decided to use “creative litigation” to help family members regain some kind of control of their mother’s cells, which have been reproduced billions of times for medical research.
She plans to file the petition for guardianship of the cells in July in Baltimore County, where Lacks’s estate resides. The petition will not include ownership, Bostick said.
The question of who owns the cells, she said, is complicated. “I think the answer is no one legally owns the cells as one whole entity,” she said. Bostick said the cells can be purchased on an open market, “so the purchaser owns the rights to the cells it acquires.”
Johns Hopkins has said it claims no ownership rights of the cells “because the cells cannot legally be patented,” Bostick said. The National Institutes of Health regulates the use of the human genome completed based on the cells, she said.
The petition for the HeLa cells would argue that a “guardianship should be appointed to speak in the best interest of a person who is not competent or otherwise to protect their property,” Bostick said.
“I can approach it as saying Henrietta Lacks is a person, who is continuing to be represented in life by her cells, or that Henrietta’s cells themselves are Henrietta Lacks and in so doing she is still living, or her cells are the property of the estate because they belong to her and require protection because she is now deceased and cannot speak on her behalf for her property,” she said.
Another argument, Bostick said, might be that “the cells themselves have their own identity, independent of the deceased person they came from. I want to give the court as many opportunities to say yes as I can.”
Eventually, Bostick said, in addition to obtaining guardianship of the cells, she hopes family members will be compensated from the profits the cells generate.
The family members have not received profits gained from the research of the cells, nor have they received adequate compensation from the book, “The Immortal Life of Henrietta Lacks,” or from the HBO movie, Lawrence Lacks said. The book was written by Rebecca Skloot with the help of Deborah Lacks, a daughter of Henrietta Lacks.
During a panel discussion, Lawrence Lacks said he is still distraught over what happened to his mother at the hospital. For many years, he said, the pain was so heavy he could not talk about it. He broke into tears on stage.
“I want to go back and put everything on paper,” he said, “so I can remember it.”
Ron Lacks, 59, said in an interview: “My father just wants to have some control over what has happened in the past. Even on our family story, we have been shortchanged. . . . The family story, we don’t even own that.”