HBO’s ‘Henrietta Lacks’ raises questions about trust and ownership

At its heart, HBO’s new adaptation of The Immortal Life of Henrietta Lacks is a story about trust: about earning it, sustaining it, deserving it and trampling it. It’s about what can result when trust is won — millions of people learn about a black woman who otherwise might have simply been known to microbiologists as cells on a slide known as HeLa.

It’s also about what happens when trust is abused: lawsuits, family squabbles that calcify into bitterness and several lifetimes’ worth of ailments. Henrietta Lacks is the black Baltimore woman whose cervical cancer cells almost single-handedly transformed the biotech industry because they kept dividing outside of her body, nourished and coaxed by a bit of chicken blood in a petri dish. Lacks’ cells, harvested at Johns Hopkins Hospital in 1951, provided an infinite supply for scientists to experiment with and test, leading to everything from the polio vaccine to stem cell research.

Based on Rebecca Skloot’s best-selling nonfiction book of the same name, Immortal Life is a deep look into the lives of Lacks’ children — specifically her youngest daughter, Deborah (Oprah Winfrey) — and the various traumas they’ve endured as a result of the explosive demand for their mother’s famous cancer cells. Director George C. Wolfe, backed by the lively tunes of Branford Marsalis, quickly flits through the scientific particulars of Lacks’ contributions in the opening scenes of the movie, providing viewers with just enough background to understand Lacks’ place in history.

But we soon learn the real reason we’re here, which is seeing how the back-and-forth between Skloot (Rose Byrne) and Deborah reveals why the fuss over Lacks was about more than a curious bit of cervical tissue. In some ways, their relationship bears the contours of a courtship. It’s almost as if Skloot must woo Deborah in order to tell her mother’s story. After an initial meeting between the two women in which Deborah seems willing to open up to Skloot, Deborah backtracks in a phone conversation. Her brother Lawrence (John Douglas Thompson) suspects that Skloot is another in a string of opportunists looking to exploit the family for her own financial gain.

“I’m done talkin’. My brother says I oughta write the book myself,” Deborah tells Skloot in the movie. “I don’t wanna get hurt again.”

When Deborah finally agrees to trust Skloot, she calls her. “What I care about is knowin’ about my sister and knowin’ about my mother,” she tells the writer. “You gotta promise me you ain’t gon’ lie, and you ain’t gon’ keep nothing from me.”

Their “dates” are trips to the far reaches of Clover, Virginia, where Henrietta grew up in a former slave cabin. Deborah wears a hearing aid and walks, aided by a cane, with a pronounced limp. Her uniform is a grandmotherly one: an array of cropped pants, comfortable shoes, a black Coach saddlebag and an ever-present WWJD (What Would Jesus Do?) lanyard.

As we learn more about Lacks’ upbringing and what happened to her children after she died in 1951, we see the boundaries of trust between Deborah and Skloot ebb and flow, until they reach a pivotal moment in which it’s clear that Deborah trusts Skloot not just with the information about her mother but also with her spirit.

“I found a publisher for the book,” Skloot says during a phone call.

“[Of] course you did. That’s my mother, paving the way,” Deborah answers.

“Could you ask her to pave it a little faster?” Skloot says.

“Ask her yourself!” Deborah replies.

It’s especially meaningful given how many times the family, once aware of their mother’s contribution to history, has fallen in with con men or other figures with selfish motivations. In one egregious incident, a con artist from Alabama (played by a note-perfect Courtney B. Vance) named Sir Lord Keenan Kester Cofield offered to represent the family in lawsuits against Johns Hopkins and various biomedical and biopharmaceutical companies.

He wasn’t even a lawyer, but a former convict. When the Lacks family realized Cofield was nothing more than a snake oil salesman, they dropped him, only to have Cofield turn around and sue them.

Much of the conversation leading up to the premiere of HBO’s Immortal Life adaptation, which Winfrey executive-produced, has revolved around accusations of unfair treatment from Lawrence Lacks, Henrietta Lacks’ oldest son. Lawrence Lacks reportedly turned down an offer to be a consultant on the movie, although other family members participated. Lawrence Lacks has also said that the book contains inaccuracies about his family, a claim the publisher disputes.

“It’s bad enough Johns Hopkins took advantage of us,” the real Lawrence Lacks said in a news release. “Now Oprah, Rebecca and HBO are doing the same thing. They’re no better than the people they say they hate.”

“I get really upset when I hear people complain [namely, some members of the Lacks family] that Rebecca, or I or HBO, haven’t done anything,” Winfrey recently told The New York Times. “When one of the sons started a Henrietta Lacks Healing Center, I did make a six-figure donation to it. And we offered them to be consultants on the film, but a small portion of the family didn’t want to be a part of it. So I don’t know what they wanted other than the $10 million they wrote me asking for.

“I don’t feel it’s my responsibility to now fulfill the role of the drug companies that have made billions off the cells. Do I think that her family should have benefited from that? Yes, I do. Do I think it’s my job or HBO’s job to make sure that happens? No, it’s our job to tell the story with as much integrity as possible.”

In some ways, it’s difficult to not see parallels between The Help and The Immortal Life of Henrietta Lacks. While The Help, the 2009 novel by Kathryn Stockett, certainly enjoyed a boost thanks to a full-throated endorsement from Winfrey, it was never an official Oprah’s Book Club selection. Skloot’s book was praised for its novelistic feel and Skloot’s obvious narrative skill, while Stockett’s was an actual novel that appeared to be based, at least in part, on a real black woman who endured the indignities of segregation-era Jackson, Mississippi.

Both raised questions about the ethics of white writers benefiting professionally and financially from telling the stories of black people who would see no direct financial gain from their efforts.

Ablene Cooper, the longtime maid and nanny for Stockett’s brother, filed a $75,000 lawsuit against the author, claiming that The Help character Aibileen Clark falsely portrayed her. Stockett’s brother and his wife agreed with Cooper, although the lawsuit was eventually dismissed because a judge ruled that the statute of limitations had expired.

With The Help, that conversation only became more fraught once a film adaptation was announced and released, prompting questions about whether it was good for black women to be heralded for playing maids, but also about the cartoonish way racism is depicted in film that allows us to overlook the more insidious ways it lurks in modern life.

While the attention to The Help has long since passed, Cooper and her lawsuit surfaced something undeniable: the feeling of the injustice of having your own story snatched from under you, only to enrich someone else. In 2015, Alyssa Rosenberg of The Washington Post wrote a two-part series examining the personal cost of publishing personal essays on the internet, and whether writers can be fairly compensated for mining their own lives and exposing their most intimate stories to the world.

“There is emotional labor that it is very difficult to put a price on,” writer Chloe Angyal told Rosenberg. “I don’t know how I would put a price on that. And especially given that women are expected to do emotional labor for free, if you are a woman writing a personal essay, it is even more difficult to price that.”

Imagine having to endure the emotional labor of seeing your own story told, without the comfort of knowing that you control it or enjoying compensation for it either. Henrietta Lacks raises questions about ethics, both artistic and biomedical. The parties who inspired and who object to both Henrietta Lacks and The Help are not so different. They’re troubled by large institutions benefiting financially from the pain, labor, body product and socially mandated limits thrust upon black women even long after they’re gone. What’s more, these people who serve as history lessons for the world are still very much alive in one way or another. Cooper’s objections to Stockett running roughshod with her story all the way to the best-seller list sound a lot like Lawrence Lacks’ issues with the book and the movie about his mother.

Wolfe and writers Peter Landesman and Alexander Woo took care to preserve those concerns. In the movie, Barbara Lacks (Lawrence’s wife, played by Adriane Lenox), lists off the various ailments plaguing Lacks’ family members who are alive: gangrene, heart disease, high blood pressure, stroke and mental illness.

“This family is the only ones haven’t made a dime off their own mother’s cells,” she says bitterly. These black people are demanding something we haven’t meaningfully addressed yet as a country: reparations. For them, whether they come from a Hollywood studio or a biotech company or a book publisher is beside the point. Having Cofield, the felonious Alabama snake oil salesman, be the only individual in the movie who actually dares say the word “reparations” and who actually spouts a numerical figure, $60 million, frames the entire notion of seeking reparations as quixotic. It’s the purview of the angry, the irrational and, in the case of Cofield, the dishonest.

“Hard not to get caught up in hope when you been powerless for so long,” Deborah explains to Skloot.

Clearly, wounds over who is profiting from Lacks’ cells and the story of her and her family still smart. As of April 18, neither adult Lawrence (played by Thompson) nor his wife, Bobette (named Barbara in the movie), appear in the full list of cast and characters on the movie’s IMDB page.

Not everything comes to a neat resolution, and what’s legal isn’t always the same as what feels ethical or fair, something of which Skloot, Wolfe and Winfrey seem to be aware.

Wrote Skloot in the afterword of her book:

People often have a strong sense of ownership when it comes to their bodies. Even tiny scraps of them. Especially when they hear that someone else might be making money off those scraps, or using them to uncover potentially damaging information about their genes and medical histories. But a feeling of ownership doesn’t hold up in court.

What remains of Lacks, spread throughout laboratories worldwide, is the result of her submitting to the harvesting of a bit of cancerous flesh when she checked herself into the hospital. Yet for some, the feeling that something has been taken from you, or has been taken from someone you love, is still real and immediate. Lacks, her children and her children’s children are the descendants of stolen individuals, people whose sweat and labor and offspring were not their own but were compelled by the threat of the lash or worse. Lacks’ great-grandmother Maria was once enslaved. Her white great-grandfather owned slaves.

Like so many of us, their existence can be explained by someone else’s larcenous actions. As Deborah puts it in the movie when she’s recounting the trauma of being raped as a teenager and connecting it with the treatment of her mother, “Everybody taking things they ain’t got no right to take.”

It can’t be easy to face the reality that your mother, in some way, now belongs to the world when, for generations, your ancestors didn’t even belong to themselves. In the case of the Lacks family, the resulting spiritual scar tissue may never be fully resected but continue to live on — just like Henrietta Lacks’ unstoppable, perpetually multiplying cells.

The Immortal Life of Henrietta Lacks premieres April 22 at 8 p.m. EST on HBO.