Can the ‘immortal cells’ of Henrietta Lacks sue for their own rights?

Washington Post – by DeNeen L. Brown

A lawyer representing the eldest son and two grandsons of Henrietta Lacks, whose “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, announced last week that she plans to file a petition seeking “guardianship” of the cells.  

“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. 

Bostick said the now-famous cells were taken without consent from Lacks, an African American, during a 1951 visit to Johns Hopkins Hospital in Baltimore, which was racially segregated at the time. Lawrence Lacks, the executor of Lacks’s estate, 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.

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.

Bostick, who has represented Lawrence Lacks and his sons for more than a year, 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 cells were retrieved from Henrietta Lacks, a housewife and young mother of five children, in 1951 when she went to Johns Hopkins Hospital in Baltimore for bleeding. 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.”

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. The cells have been used in the research of toxins, hormones and viruses and to study the effects of radiation and the development of the polio vaccine.

“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.

“Today, Johns Hopkins and other medical research centers maintain strict patient consent processes for tissue and cell donation,” Johns Hopkins said.

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.

Bostick says the argument to establish guardianship of the cells is important because of the unique characteristics of the cells’ ability to live outside the human body. That makes it difficult to establish legal precedent for the case.

But in her research, Bostick said, she found two cases that might be considered precedent.

In 2004, a Florida appeals court panel ruled that Gov. Jeb Bush could not appoint a guardian for the fetus of a developmentally disabled woman who had been raped and impregnated by a staff member at a state-run group home in Orlando. “The judge said that if the legislature had decided that a fetus was entitled to guardianship protection,” Bostick said, “it would have so legislated.”

The second is a 2017 case in Michigan in which a court denied a motion by a woman who sought custody of frozen embryos created with her partner before their relationship ended in 2013.

The woman wanted to be implanted with an embryo “in order to give birth to a healthy child and then use stem cells from the child’s umbilical cord for transplantation” to their older, natural-born daughter who had been diagnosed with sickle cell disease, according to the ruling. The court decided that the case was a contract dispute.

The petition for guardianship of the HeLa cells would differ from arguments in those two cases because embryos and fetuses cannot survive outside the womb unless frozen.

“Specifically, the embryo or fetus requires a human mother in order to grow,” Bostick said. “At this time, the HeLa cells do not require a mother to grow or relocate.”

The petition 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.

Five family members served as paid consultants to the movie, according to a 2017 Washington Post interview. Lawrence Lacks refused to consult on the film, Bostick said, “having been advised by prior counsel not to participate and therefore did not receive compensation.”

Lawrence Lacks, 85, said during a panel discussion at Busboys and Poets in Washington last week that “I did not want to sell rights to my life.”

He said he disagreed with the way the family was portrayed, though some family members have endorsed the book and movie. Lacks said he feels it is unfair that some family members have been excluded from opportunities to give speeches across the country.

Veronica Spencer, a great-granddaughter of Henrietta Lacks, and her cousin, David Lacks Jr., were selected by other family members to serve on the NIH working group that reviews requests from researchers to use the HeLa, according to the 2017 Post interview.

In 2017, Lawrence and Ron asked that the Henrietta Lacks Foundation, established and funded mostly by Skloot, be transferred to their control. They also demanded that “HBO and Winfrey’s Harpo Films donate $10 million each to a new foundation started in Lawrence’s name, and that a speakers’ agency stop booking other family members for appearances without Lawrence’s approval,” according to a 2017 Post interview.

NIH told The Post in 2017 that it would refuse to get involved in a family dispute. Attorneys for Skloot responded to the allegations by saying there is case law that would establish that Lawrence and Ron have no authority over other family members speaking about Henrietta Lacks at public forums.

Deborah Lacks, who is portrayed by Oprah Winfrey in the movie, died in 2009 at age 60.

Bostick said she and Lawrence Lacks have tried to organize family members into a meeting regarding the guardianship petition. “We have so far been unsuccessful,” she said.

During the 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.”

“It’s not all about the money. My family has had no control of the family story, no control of Henrietta’s body, no control of Henrietta’s cells, which are still living and will make some more tomorrow.”

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