The Immortal Life of Henrietta Lacks

and the way some of their relatives profited from it by giving speeches around the US.

Now they were levelling a series of public charges at the book’s author, Rebecca Skloot, and publisher, Winfrey, HBO executives, officials at Johns Hopkins Hospital, the US’s 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 grandfather, whom Spencer worshipped from childhood, and her Uncle Ron 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 as 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.” 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 began a campaign to assert near-total control over the growing endeavours surrounding Henrietta Lacks.

Henrietta died in 1951, but her tumour cells have been cultivated to this day. 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 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 US colleges and medical schools. Oprah 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. Spencer and her cousin, David Lacks jr, were selected by other family members to serve on an NIH working group that reviews requests from researchers to use the HeLa cells.

This has not sat well with Lawrence, 82, and Ron, 58, who participated in the endeavours early on but said they were now excluded. In scores of e-mails and news releases sent by their 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 (R138m) 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.

The claims are largely based on Lawrence’s role as Henrietta’s oldest child and the only living executor of her estate. 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.

The book, Lawrence said, failed to capture his mother’s grace, as did her growing fame as a medical phenomenon. More and more, she seemed not like a wife and mother of five but “just a cell”, he said. Skloot also made the Lackses seem poor and uneducated, he said, although he also acknowledges he hasn’t read the book.

Ron brought up one of the examples repeated in news releases: that Henrietta is portrayed as being unable to sign her name. Skloot, however, cited two separate pages depicting Henrietta signing and writing her name.

“She made us stereotypes,” Ron maintained. “People think we’re dirt-poor.”

He also resents all the money being made in Henrietta’s name, from the multibillion-dollar medical research industry to Skloot’s royalties, to the speaker fees his cousins collect.

A March 20 news release accused Skloot of not sharing her book profits through the Henrietta Lacks Foundation, which Skloot started with a portion of her first royalty check.

But several members of the Lacks family said they had had direct benefits from the foundation, including college tuition, cataract surgery and other medical procedures.

Ron acknowledged he had dental work paid for by the foundation, which in each of the past five years had donations below $50 000, the threshold for public disclosure. – The Washington Post