From BET's Rebel to Colson Whitehead's Pulitzer Prize-winning novel The Underground Railroad, popular culture has taken notice of the Black Lives Matter movement and the ongoing discussions about black bodies, often using it as a plot device. Oprah Winfrey jumped into this conversation with her HBO production of Immortal Life of Henrietta Lacks, a film about the journey to understand the legacy of extraordinary cells that transformed biomedicine. The movie, which premiered over the weekend, was fascinating—especially because the production has been embroiled in controversy over who has the right to tell the story of a family whose agency has already been abused by the medical system.
Henrietta Lacks "is not the first body that has been used. There's a long historical context," Daina Ramey Berry, an Austin-based historian at University of Texas, told me. Her book The Price for Their Pound of Flesh documents the commodification of enslaved bodies—including the body-snatching industry evoked by Whitehead—using black bodies for medical research at institutions that thrive to this day. "The field of medicine has long taken black bodies at will without consent. This shows there's a larger historical continuum for these kinds of practices."
The movie is based on the bestselling book by Rebecca Skloot (a white writer played by Rose Byrne in the film), who investigated the case of Henrietta Lacks, a poor, black Maryland woman whose cells were appropriated by Johns Hopkins Hospital in 1951 while she was being treated for cervical cancer. Lacks didn't survive, but her miraculous cells turned out to be extraordinary in their ability to live outside the body.
Dubbed HeLa, those cells live and thrive to this day; they've been responsible for breakthroughs in polio treatment, according to Alondra Nelson, Ph.D., the author of The Social Life of DNA. The cells changed the course of biomedical science, helping to understand cancer and other diseases while earning billions of dollars by companies that have purchased Lacks's cells for research and development. Still, the Lacks family hasn't seen a cent from this research bounty, and some still feel diminished by the well-received book, this movie, and institutions that still benefit financially from Lacks's cells.
"I would be upset, too," Winfrey said on a conference call, noting that she invited the family to help flesh out who Lacks really was. She explained that the trouble with compensating Lacks's descendants is trying to trace drug companies and millions of variations of cells that have been dispersed: "That's a lawsuit I wouldn't want to be in."
With ownership and agency at the center this touching yet controversial story, Winfrey has been careful to characterize her portrayal of Lacks's daughter Deborah as the "spirit and essence" and "artful expression" of Lacks's life, because there's no way she could fully depict everything the wife and mother was. Winfrey indicated her goal is to make Henrietta Lacks a household name; even she couldn't believe she'd never heard of her until Skloot's book came out in 2010: "I know if I don't know that story, there's at least a million people who don't know."
Though Lacks's life story is peculiar and particular to the Lacks family, Winfrey explained that many African Americans will be able to see themselves through the exploitation of Lacks and the ethical transgressions documented in the film. "African Americans don't have a long history of bodily ownership," Harriet Washington, a noted medical ethicist and author of Medical Apartheid, told VICE. "This woman could be anybody's relative."
In the aftermath of exploitation, Washington said, African Americans have found themselves vilified and demonized, vested with negative images and stereotypes about their bodies. What bothers Washington is how some people have tried to excuse the behaviour that led to the theft and use of Lacks's cells: "People attempt to excuse such treatment: 'That's how things were done back then'," she said. "That's not how things were done back then. That's how things were done to black people." Even if the medical establishment failed to follow what is called "informed consent," Washington said, there was a physician's' code that would require permission before leveraging a person's own body for research or profit.
The idea that black people don't own their bodies is wired into the American psyche. Ramey Berry's research reveals how black bodies actually were valued during slavery, when they were considered property that could be documented in a financial ledger. Only after the Civil War, when whites couldn't write off the loss of a dead slave or gain from the sale of an alive slace, did black lives become persistently less valuable.
Of course, Ramey Berry argues, the US system of mass incarceration and professional sports continue to commodify black bodies. Inmates, disproportionately represented by blacks, work for meager sums, and the prison system is setup to capitalize on their presence and labour as an investment. And college football and basketball players don't financially benefit from the commercial licensing of their images, names and likenesses even though their overwhelming presence undergirds the money-making system. This is why Ramey Berry put names and backstories on enslaved people chronicled in her narrative, much like Winfrey's quest to make Lacks's name known to all.
Henrietta Lacks's story still resonates, Winfrey said, as it's still possible in the age of informed consent to have one's cells and other body parts used in research without patients knowing how, where, or why. It's this ongoing resonance and desire to highlight people of colour that sticks with Winfrey.
"Every time I find a story where a person of colour has made a mark, I feel lifted by that," Winfrey said. "Ordinary people can do extraordinary things through their faith, and through their work can shine the light of goodness on us."
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