The email from her sister said “Read Now!” so Veronica Spencer sat right down to open it.
Maybe it was about the soon-to-be released Oprah Winfrey/HBO movie about Spencer’s great-grandmother Henrietta Lacks, the Baltimore cancer patient whose cells were collected by Johns Hopkins researchers without her knowledge. Or about Spencer’s upcoming speech in Indiana, where she would talk to medical students about Henrietta’s role in revolutionizing medicine.
Instead, she learned that her close-knit and increasingly famous family was at war with itself.
The March 2 email contained a link to a college newspaper story about her grandfather and uncle. Lawrence Lacks — Henrietta’s oldest child — and his son, Ron Lacks, had long been unhappy with the family’s portrayal in the best-selling book “The Immortal Life of Henrietta Lacks” and the way some of their relatives continue to profit from it by giving speeches around the country.
Now they were leveling a series of very public charges at the book’s author and publisher, and at Winfrey, HBO executives, officials at Johns Hopkins Hospital, the National Institutes of Health and other family members, accusing them variously of misrepresentation, exploitation and fraud.
The most explosive allegation was that some family members aren’t family members at all. Her Pop-pop, whom Spencer worshiped from childhood, and her Uncle Ron, who used to give her pony rides on his back, were saying that Veronica and her sister were not really their kin and that they had the DNA tests to prove it.
Ron was quoted in the story saying: “They’re not blood-related to Henrietta. . . . They’re not family.”
Spencer, 30, read through tears. “It was like an uppercut to the stomach,” she said. “I just fell to the floor.”
Within minutes, the Lacks’ texts were flying: “Who’s available for an emergency family meeting?”
How do long-standing family tensions get weaponized? At what should be the family’s moment of triumph — the eve of a Hollywood portrayal of Henrietta — Lackses on both sides are trying to understand how their rift grew so ugly and public.
Last month, Lawrence and Ron Lacks — with the help of a Baltimore publicist willing to make incendiary charges — began a campaign to assert near-total control over the growing endeavors surrounding Henrietta Lacks. Henrietta died in 1951, but her tumor cells have been cultivated to this day. Researchers had tried many times to keep cell lines alive outside the body, but the cells always died.
The “HeLa” cell line has been central to the development of vaccines, cloning, gene mapping and billions of dollars in medical breakthroughs.
The story had been largely unknown until Rebecca Skloot, a science writer, and Henrietta’s youngest daughter, Deborah Lacks, spent more than a decade prying the tale from hospital archives. Skloot’s 2010 book was a commercial and critical smash, selling more than 2.5 million copies. A page-turning lesson in ethics, race and family fealty, the book is now assigned reading at hundreds of colleges and medical schools. Winfrey secured the movie rights within months and will star as Deborah Lacks when the film airs on HBO on April 22.
A cottage family industry has grown up around Henrietta, with multiple Lacks descendants giving speeches and starting foundations of their own. Five served as paid consultants to the movie. Spencer and her cousin, David Lacks Jr., were selected by other family members to serve on a NIH working group that reviews requests from researchers to use the HeLa cells.
None of that has sat well with Lawrence, 82, and Ron, 58, who participated in the endeavors early on but said they are now excluded.
In scores of emails and news releases sent on their behalf by publicist Karen Campbell, they demanded that the Henrietta Lacks Foundation, established and largely funded by Skloot, be transferred to their control; 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. They urged NIH to let Lawrence decide which Lacks family members would serve on the HeLa advisory group and to suspend all research funding to Johns Hopkins. They asked Penguin Random House for an advance to write their own book.
NIH responded that it wasn’t getting involved in a family dispute. The corporations said no to the donations and the book advance. And lawyers for Skloot pointed to ample case law saying Lawrence and Ron had no authority over others’ speaking about Henrietta at public forums.
In an interview at Ron’s Baltimore County home, Ron and Lawrence laughed a bit about the $10 million ask. “Kind of a stretch, huh?” Ron said. But both said the continued snubbing of Lawrence is heartbreaking.
“They don’t even consult my dad,” Ron said. “We want everybody to stop and regroup and let the head of the family decide how we’re going to do things.”
Lawrence nodded. “It used to be in this family,” he said, “that people listened to their elders.”
Lawrence Lacks is a gentle, genial octogenarian who drove Amtrak trains for 25 years. He still goes to the gym and mounted the front steps of his son’s small brick house with a firm tread.
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SOURCE: The Washington Post – Steve Hendrix