BALTIMORE — 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 an 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.
The claims are largely based on Lawrence’s role as Henrietta’s oldest child and the only living executor of her estate. “He’s the head of the family,” said Ron, although he has his father’s power of attorney.
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.
“Hey, Pop,” Ron greeted him, a cellphone pressed to his ear. “C’mon in.”
As Ron bustled between the kitchen and the small bedroom where he cares full-time for his bedridden mother, Bobbette Lacks, Lawrence sat on the couch, hands on knees, ready to talk about Henrietta, who died when he was 17.
“She was a loving, freehearted woman,” he said, remembering the family members Henrietta had helped and her deathbed directions. “She told me to keep the family together. I try. I’m the oldest, but I don’t have no say in anything.”
The book, Lawrence said, fails to capture his mother’s grace, as does her growing fame as a medical phenomenon. More and more, she seems 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 that he has not 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 earnings of multibillion-dollar medical research industry to Skloot’s royalties to the speaker fees his cousins collect.
“They’re getting $5,000 a speech, and my mother is in there needing care?” Ron asked. “What’s fair about that?”
Jeri Lacks Whye, one of Henrietta’s granddaughters, said she found the book accurate and positive overall. She is at the center of a shifting list of seven or eight Lackses who have appeared at more than 100 colleges and medical schools since 2011. But when Ron used his one outing to air complaints about the book, he wasn’t invited to join them again.
“We’re trying to create something positive around my grandmother’s legacy,” Whye said.
Ron and Lawrence contend that the others have “sold out” to Skloot, HBO and Winfrey, signing agreements that restrict what they can say. Lawrence said he turned down HBO’s offer of a $16,000 consultant fee and, later, the chance to see the film at a private screening because he was asked “to sign my rights away. I wouldn’t be allowed to talk about my mother anymore.”
An HBO representative said the consulting contract was an industry standard and that the screening nondisclosure form applied only to discussing the movie’s content before its official release, not speaking publicly about Henrietta Lacks.
Len Amato, president of HBO Films, said those involved in the production tried to include Lawrence throughout the process. He remembered a pleasant meeting with him at a lunch Winfrey threw for the family at Baltimore’s Four Seasons Hotel last summer, the last time the extended clan was all together. But the tone of the relationship shifted, he and others said, with Karen Campbell’s work publicizing Lawrence and Ron’s grievances.
“To be honest with you, we have no idea how much [she] is representing their point of view,” Amato said. “Since that representative came into the picture, we’ve been barraged by an incredible amount of email that I don’t think is helpful in getting anything productive done.”
Skloot said she, too, has been inundated with communications from Campbell. And the charges and demands in the emails and news releases have grown more serious.
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 have gotten direct benefits from the foundation, including college tuition, cataract surgery and other medical procedures. Ron acknowledged that 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.
Individual donations and the 56 grants of up to $10,000 each made to Lacks family members are confidential, Skloot said. She noted that she negotiated a significant HBO contribution this year as part of the movie deal. And she maintained she has been “extremely devoted to fulfilling my promise to Deborah that I would help the Lacks family after the book was published . . . and it’s infuriating and hurtful that someone is suggesting otherwise.”
The March 20 news release also described Spencer and her sister, Victoria Baptiste, as “imposters” and said they were “posing as Lacks family members to make money.”
Appalled, Spencer said she and other family members began questioning Campbell’s role — and her financial motive — in driving a wedge through their family.
“Is my grandfather really saying all of these things?” Veronica wondered. “This entity came into our life claiming to speak for the entire Lacks family.”
Asked to respond, Campbell issued a statement accusing The Washington Post of “writing a sensationalized story focusing on the backgrounds and personal lives of volunteers discouraging them from helping the Lacks family.”
Ron said he met Campbell through a lawyer he contacted to help with their claims, including a possible lawsuit against Johns Hopkins. Campbell had an agreement with the lawyer for a percentage of any money they gained, he said, but the lawyer no longer represents them, and Campbell has continued to work at no charge.
Ron and his father said they are pleased with her efforts.
“She’s the first one to get us any attention,” he said. He looked over at his father with a smile. “We need somebody to push. My dad, he ain’t got no fight in him.”
But asked specifically about the decision to release the DNA testing, which was done five years ago during a different dispute and was a closely held family secret, they hesitated. Lawrence said he didn’t like the idea of the clan’s “dirty laundry being out there.”
Ron shook his head. “What other choice did we have?” he asked. “We asked them to stop doing these speeches, and they didn’t.”
The fallout isn’t finished. While the DNA testing showed that Lawrence is not Spencer’s grandfather, a second test suggested that another Lacks man might be, something family gossip had hinted at for years.
A geneticist who reviewed both test results this week at the family’s request said additional testing would be needed to establish whether Spencer and her sister are Lacks descendants.
“It’s really close either way,” said Gonçalo Abecasis, chair of the biostatistics department at the University of Michigan. “We’d need a little more data.”
But no one needs more data to recognize the damage that’s been done. “I let all this stuff get out of hand,” Ron acknowledged this week. “I just hope my family can get back together.”
His father had already reached the same conclusion. “Those girls are family,” Lawrence said. “I love them as much as I love all my grandchildren.”
His goal, he said, had been to unite the family, not divide it.
Jennifer Jenkins contributed to this report.