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Who Owes the Henrietta Lacks Family?

The Oprah-led HBO film is a moving portrayal of a black family’s struggle for justice. But is being seen enough?

(HBO)
(HBO)

When a medical researcher pulls cells out of the cryo-chamber that keeps them alive, an astonished Deborah Lacks (Oprah Winfrey) cradles the vial in her hands. "You’re famous," she whispers to the cells, blowing vapor away from their container. "Just don’t nobody know it."

Moments later, with the laboratory lights dimmed, the researcher projects images of the cells onto a wall. Deborah and her brother, Zakariyya Bari Abdul Rahman (Reg E. Cathy), stand awestruck in the glow of the cells’ projection, basking in their mother’s light. It’s the closest they’ve ever come to her as adults.

Their "unknown" late mother, a Baltimore woman named Henrietta Lacks (played in the film by Renée Elise Goldsberry), died of cervical cancer when Deborah was a toddler. The Immortal Life of Henrietta Lacks, the HBO adaptation of journalist Rebecca Skloot’s best-selling 2011 book, chronicles the real-life saga of Henrietta’s cells and the children they still haunt. Before the cancer killed Lacks in 1951, Johns Hopkins Hospital removed some of her cells during a biopsy and used them for research experiments without permission from Henrietta or any family members. Named HeLa for the first two letters of Lacks’s first and last names, the sample became the first "immortal" cell line — meaning the cells could be reproduced in a lab, outside Henrietta’s body, making them invaluable for research. They spread to facilities far and wide, eventually being used for studies that would herald unimagined breakthroughs in treating everything from leukemia to Parkinson’s disease to the flu.

For years, the Lacks family has pursued restitution for their mother’s involuntary contribution to science. Patient consent for research using tissue removed during a procedure was not required in 1951; the medical providers’ reasoning was that such research would benefit the common good. But for black people like the Lacks family, especially those from poor or working class backgrounds, limited access to health care made that premise effectively inapplicable. Skloot’s book lays out the ethical concerns in the Lacks family’s ongoing struggle to receive compensation and explores tangled histories of race, medicine, and exploitation in the process.

The Lacks’s story is at once singular — certainly, HeLa cells are unique in their massive application — and emblematic of a larger, shameful pattern: Black people have long served as unwitting, involuntary subjects for (sometimes violent) medical research. Whether from HeLa cells or the Tuskegee Experiment, a 40-year medical study in which hundreds of unconsenting black men were denied treatment for syphilis so researchers could study its effects, countless medical advancements have come as a direct result of materials or labor forcibly extracted from black bodies. That their families rarely see the fruits of the donors’ sacrifice — and that black people face unique barriers when trying to access health care — compounds the original exploitation.

Both the book and film version of The Immortal Life of Henrietta Lacks grapple with Henrietta’s history, weaving together details of her short life and her family’s journey to uncover it with a deft, compassionate hand. In the process, the projects raise larger questions about ethics, discrimination, and erasure within the medical industry and the country writ large. The film is especially affecting: that the Lacks family never sees compensation for Henrietta’s gift to modern science feels viscerally wrong; seeing their anguish embodied drives home the magnitude of that intimate injustice. But just as it’s easier to identify racism than racists, so too does The Immortal Life of Henrietta Lacks stop short of directly indicting specific parties on the family’s behalf. The resulting film is moving and accessible, but it offers no absolution. The Immortal Life of Henrietta Lacks — and the circumstances around its production, which mirror the film’s central issues — instead poses the question of whether justice for the Lacks family is even possible.

With a breezy 92-minute run time, The Immortal Life of Henrietta Lacks is at once compact and complex. Writer/director George C. Wolfe, along with screenwriters Peter Landesman and Alexander Woo, reinforce the fundamentally human approach of Skloot’s book. Rather than overwhelm viewers with scientific or legal history, their film traces the story of the Lacks family’s attempts to both receive restitution and grapple with the trauma they inherit. At times, it’s hard to watch the siblings argue so intensely over their mother’s legacy around the proverbial kitchen table. Deborah often looks defeated by the way her male relatives treat her; even and especially within the fabric of a large family, Deborah somehow seems fundamentally lonely, the only child without any real knowledge of her mother, her roots.

Crucial to that character calculus is Oprah’s portrayal. The role of Deborah is quintessentially Oprah: heavy, complicated, and ultimately revelatory. Speaking with University of Pennsylvania professor Salamishah Tillet for The New York Times, Oprah, who also serves as an executive producer for the film, said HBO Films president Len Amato and actress Audra McDonald convinced her she needed to work with Wolfe as an actress, too: "He was the person who was able to take a script that felt overridden by the science and re-adapt that into a story about a woman in search of her identity through her mother. That’s why it happened." Deborah Lacks is, in turn, the film’s identity. Through her eyes viewers see — and feel — the burden of being denied access to family history, of having one’s hopes lifted and dashed, of never receiving justice. Deborah’s medical issues — anxiety among them — present not just as preexisting conditions, but partially as natural responses to all her family has endured and the result of going years without accessing adequate treatment.

Deborah, and all the Lacks siblings, are exhausted by the legion of (primarily white) people who contact them only to benefit from their mother’s cells. Every person who has claimed to champion the Lacks’s interests fades away as soon as their own needs are met, and Deborah is understandably suspicious of Skloot (Rose Byrne), a white woman who suddenly appears in her life hoping to tell her mother’s story. Deborah is at times even hostile, convinced Skloot is working for Johns Hopkins or another institution that’s sent her to drudge up Henrietta’s memory in service of a mission that will never benefit the Lacks family. In one scene, Deborah grabs all of Skloot’s documents, financial and otherwise, demanding to know who is paying her. Their interaction is layered with distrust and shared desperation. Skloot understands that the Lacks family has every reason to be wary of her, and Byrne imbues her character with well-meaning exasperation and dogged commitment to Lacks’s story. The honest portrayal of desperation is a balm, but it is not necessarily a solution.

That the Lacks family is owed remains painfully clear, but the question of who exactly is responsible for that debt hangs over the film, at times uncomfortably. Is it Johns Hopkins, the medical facility where doctors first harvested Henrietta’s cells? The institution insists it hasn’t patented or profited from sales of the cells, so it is not legally indebted to the Lacks family. (The institution did, however, announce a joint agreement with the National Institutes of Health in 2013 to grant the family some measure of control over how their mother’s genetic material is used.) Drug companies, many of whom have developed breakthrough treatments as a direct result of access to HeLa cells, have avoided sharing their profits. The film wrestles with Skloot’s introduction into the web of people and institutions who ultimately profit from the Lacks family. Deborah’s suspicion slowly gives way to an unlikely camaraderie with Skloot, even as some members of the family remain less thrilled about the project and the white woman and its helm. The film’s final credits reference both Skloot’s creation of the Henrietta Lacks Foundation and the fact that the Lacks family never received compensation for Henrietta’s cells.

In advance of the film, the family’s continued attempts to reckon with that fundamental question resurfaced in the news. Several members of the Lacks family have been actively participating since Skloot’s early book events. Many of them — including Henrietta’s children Zakariyya Bari Abdul Rahman and David Lacks Jr. and grandchildren Jeri Lacks Whye, Alfred Carter Jr., and La Tonya Carter — served as consultants on the film. But even as a wave of relatives support both the book and production, Henrietta’s son Lawrence Lacks remains unmoved by Skloot, HBO, and Oprah’s endeavors. Lawrence, the eldest of Henrietta’s five children and the only living executor of her estate, expressed dismay once again at his family’s portrayal in both the book and film. "It’s bad enough Johns Hopkins took advantage of us," he said in a March press release. "Now Oprah, Rebecca, and HBO are doing the same thing. They’re no better than the people they say they hate." Lawrence, who takes issue with the book and has refused to watch the movie, insisted his siblings and other relatives stop making speaking appearances in connection with both works.

For other relatives, those venues are valuable not just because they are opportunities for the family to earn money for Henrietta’s contribution, but also because they offer platforms from which to share her story: "We’re trying to create something positive around my grandmother’s legacy," Whye told The Washington Post. That legacy — not profit or prestige — is what Oprah, Skloot, and HBO all herald as the the film’s raison d’être. Still, even as other Lacks children and grandchildren celebrate the newest rendering of Henrietta’s story, Lawrence insists on his right to determine what’s best for his mother’s estate and her memory. With the help of a publicist, both Lawrence and his son Ron remain steadfast in their objection to the production.

The Skloot-related projects seem to especially upset Lawrence, whose attachment to the role of familial patriarch has produced a specific vision of justice (namely, his own). Channeling the desire to receive restitution for his mother’s contribution, Lawrence made an especially bold demand, one which even "disappointed" Oprah: that Skloot transfer control of the foundation she started in his mother’s name and that HBO and Oprah’s Harpo Films each donate $10 million to a foundation to be started in his name, which even Ron called "kind of a stretch." Both demands stand in stark opposition to the rest of the family’s cooperation with Skloot, Oprah, and HBO — and the position Oprah understands herself occupying as a producer and actress:

It is a familiar but no less vexing question, and one that echoes the concerns in the work itself: What is the author and filmmakers’ responsibility to their subjects? Deborah — who died in 2009, nine months before the book’s release — could not sign off on the film’s portrayal of her. Henrietta is, of course, long deceased. Neither woman can speak to the book or the film’s reflection of her story. Are Lawrence’s objections steeped in rightful indignation, bitterness, or some amorphous mixture of the two?

So often in American history, those whose contributions — physical, musical, written, or otherwise — get subsumed without credit or compensation have been black. Whether it’s the creators of now-trendy Southern fare, the progenitors of rock ’n’ roll and countless other musical genres, or the human chattel whose disembodied flesh augmented both land and legislators, black people have been the source of America’s most precious, violently extracted gifts. If we recognize these as debts largely unpaid, what bearing does that have on cases like Henrietta’s, in which the law is ill-equipped to solve an economically complicated moral imperative? If the medical industry owes Henrietta compensation for her cells, do the publishing and entertainment world owe the living Lacks family members (further) resources for access to the content these industries also profit off of?

The Lacks case — and the myriad smaller, less publicized stories of black people in America whose families have yet to receive restitution for an irreplaceable contribution — underscores the limits of journalism and art as activism. Skloot’s foundation and Oprah’s contributions are both extracurricular ventures, each attempting to remedy the simple truth that it is not enough for Henrietta’s story — and her family’s — to be everywhere, to hover over patients and readers and audiences as a gentle nod to the Lackses’ benevolence. But The Immortal Life of Henrietta Lacks is a poignant reminder of its own truth: The satisfaction of scientific advancement or critically acclaimed art doesn’t pay medical bills on its own; a family cannot walk into Johns Hopkins and receive care simply with a whisper of an exploited black woman’s name. Henrietta’s cells may be immortal, but her descendants are not; while they are alive, they deserve to bask in riches both symbolic and literal.

Disclosure: HBO is an initial investor in The Ringer.