The cause was complications from liver disease, said his son Ron Lacks.
Mr. Lacks, one of Henrietta Lacks’s five children, lived to see his family’s first legal settlement, on Aug. 1, with a biotechnology company that had allegedly profited over the use of the “HeLa” cell line, so called for the first two letters of her first and last names.
The cells have been used in medical breakthroughs over the past seven decades, including on research to develop vaccines for polio and the coronavirus as well as cancer treatments and in vitro fertilization.
Henrietta Lacks had been a Virginia tobacco farmer with her husband before they moved to Turner Station in Baltimore County in 1941. After she noticed vaginal bleeding, she entered a segregated ward of Johns Hopkins Hospital and was diagnosed with cervical cancer. A doctor reportedly took a sample of her tumor — an invasive procedure — without asking or informing her.
The doctor then gave the sample to a prominent cancer researcher at Johns Hopkins University, who soon discovered that her cells, unlike most, could be reproduced in a laboratory setting, enabling them to be studied indefinitely by scientists.
Henrietta Lacks died at the hospital on October 1951, at age 31. Ron Lacks said his father, who left school at 16 to care for his ailing mother and four younger siblings, was so “traumatized” by seeing the effects of the radiation on his mother “that he didn’t talk about her for years.”
Mr. Lacks, who went on to a career as a locomotive engineer, recalled Hopkins researchers reaching out to him and other relatives to provide blood samples without making clear they were being used to research Henrietta Lacks’s cells. The family’s medical histories were published in research papers without their knowledge.
A chance encounter by a relative with a medical researcher in the 1970s led the family to start to uncover the truth of what was happening with the cells. The family tried to investigate, Ron Lacks said, but lawyers were either reluctant to take a case that involved a powerful institution like Hopkins or told the family that the statute of limitations had expired.
The story came to wider prominence in 2010 when Rebecca Skloot wrote “The Immortal Life of Henrietta Lacks,” a book about Henrietta Lacks and her impact on science. The book was adapted into an HBO film in 2017 starring Oprah Winfrey as Deborah Lacks, a daughter of Henrietta.
While some family members supported the media’s embrace of the family’s legacy, Lawrence Lacks openly disapproved of the HBO film. He and Ron Lacks framed the film as another form of profiting off Henrietta Lacks’s life without compensating the family, and said the Skloot book contained inaccuracies.
“That’s why I decided to write my book,” Ron Lacks said, noting his own account, published in 2020 as “Henrietta Lacks: The Untold Story.” “For instance, my grandmother was not illiterate and did not sign her name with an ‘X.’ She didn’t live in a rundown house in Turner Station. Like everyone in the Baltimore of those days, she scrubbed the steps of her home.”
No legal challenges were filed until 2021, when the family hired civil rights lawyer Ben Crump to explore lawsuits against biotechnology and pharmaceutical companies that profit from HeLa cells. The first of those cases, against Massachusetts-based Thermo Fisher Scientific, was settled on undisclosed terms.
The family’s lawsuit against Thermo Fisher said the company “made staggering profits in the tens of millions of dollars by using the HeLa cell line — all while Ms. Lacks’ Estate and family haven’t seen a dime of it.”
Days after the victory, the family filed another lawsuit (which remains ongoing) against Ultragenyx Pharmaceutical.
Mr. Lacks wasn’t able to attend the news conference about the settlement because of health issues, but when he arrived home, Ron Lacks spoke to his father.
“I took off my jacket and said, ‘It’s done,’” he said. “And he was so proud.”
According to a Hopkins publication, “Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line. Rather, Johns Hopkins offered HeLa cells freely and widely for scientific research. … Though the collection and use of Henrietta Lacks’ cells in research was an acceptable and legal practice in the 1950s, such a practice would not happen today without the patient’s consent.”
Lawrence Lacks was born in Clover, in rural southern Virginia, on Feb. 6, 1935, and moved with his family to Baltimore County when his father found work at Bethlehem Steel Corp.
After completing his GED, Mr. Lacks served in the Army and worked for various railroads before retiring about 30 years ago as an Amtrak engineer.
His wife, Bobbette Cooper, a registered nurse and homemaker, died in 2022. In addition to his son Ron, of Rosedale, Md., survivors include two other children, Lawrence Lacks Jr. of Rosedale and Ladonna Lacks of Baltimore; five grandchildren; and three great-grandchildren.
— The Washington Post contributed to this report
