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Waiting for Henrietta
SoVaNow.com / April 06, 2017We’re less than three weeks away from the April 22 premiere of the HBO adaptation of “The Immortal Life of Henrietta Lacks,” starring Oprah Winfrey in the incredible story of Halifax County’s most famous product. If for some reason the tale is unfamiliar (not sure how that could happen in this day and age), Henrietta Lacks grew up poor in a Clover sharecropping family before moving as an adult to Baltimore, where she died in 1951 of cervical cancer. Her name was lost to memory until science writer Rebecca Skloot wrote a 2010 book about Lacks’ unique legacy as the progenitor of a cell line that reproduced endlessly after her death, to the consternation of medical researchers. HeLa cells, sampled at Johns Hopkins Hospital in Baltimore and carrying the shortened first and last names of the donor, have since been used to develop medical breakthroughs from the polio vaccine to human genome mapping. All the time, Henrietta’s descendants knew next to nothing about her contribution to modern science, and reaped even less of the rewards.
When “The Immortal Life of Henrietta Lacks” came out, it received near-universal praise — for good reason. Skloot found an unusual story and told it with breathtaking grace and moral imagination. The book was a huge hit with critics and readers, including Winfrey, who pushed to make the film adaptation. (In the HBO movie, Oprah plays Deborah Lacks, Henrietta’s embittered daughter, who essentially functions as the main character of the book — Skloot’s witness to the ethical blind alleyways that left the family impoverished and in the dark even as millions of dollars in profits were made off of Henrietta’s cell line. To be such a mega celebrity, Winfrey has a real gift for playing beaten-down characters — I’m looking forward to seeing what she does with this one.) “The Immortal Life of Henrietta Lacks,” both in book and movie form, represents a triumph for the Lacks family. Just as a side note, it was an honor meeting the late David “Sonny” Lacks, Henrietta’s son, and other members of the Lacks and Pleasant families when they traveled to Clover in May 2010 for the dedication of a headstone where Henrietta Lacks’ remains lie. Halifax County is depicted harshly in the book (and Skloot’s characterizations of people and places on the periphery of the Lacks family saga are sorely disputed in some quarters) but all in all, our community’s place in this amazing story should be a source of pride and reflection. That’s true even with the filmmakers’ decision to shoot scenes set in Halifax County someplace else.
So what prompts these ruminations on a movie that hasn’t come out yet? In March, The Washington Post reported on a bitter split among members of the Lacks family that’s just thoroughly painful to read. Long story short, Henrietta’s son Lawrence, the eldest of five children and the only one who survives, and his son Ron are warring openly with other family members over the money and renown that has come their way in the wake of publication of Skloot’s book. The Washington Post article hints very strongly that the split is fueled by outside manipulation of Lawrence and Ron Lacks, and there’s been some ugly Lacks family lore since dredged up that would have been better off left buried. As I said, it’s an old and familiar story. Probably the worst kind of story of all.
There’s really not much else to say about this latest, unfortunate twist in the life and afterlife of Henrietta Lacks, except to observe that everything about her personal history is a unicorn: you wouldn’t believe in its existence unless you had witnessed it for yourself. When Henrietta died in the early ‘50s, no one thought twice about sampling her lifeless tissue, and even less heed was given to the possibility that the cell line might produce something of lasting value, intellectual or monetary. I recall reading the book and marveling at Skloot’s seeming effortless skill at steering the story towards questions of bioethics and philosophy, but I also remember thinking that the story was so unusual as to be of limited value going forward. This probably speaks to my own lack of imagination. As science unlocks the mysteries of life and existence, the value of a single human cell becomes hard to know. In that sense, we’re not so far advanced from the 1950s.
One more thing: if we were capable of having a grown-up discussion about health care in this country, we’d spend less time arguing about how to jerry-rig various aspects of the insurance system (private vs. public, subsidized vs. non-subsidized) and more time thinking about how to drive down the costs of health care as a whole. One of the ironies of the Henrietta Lacks story is that her descendants missed out on a gold mine that ensued with the discovery of the unique science underlying her cells. But it’s not like the initial HeLa research — or much of the research that came after — was propelled by the force of the profit motive. Anything but. One of the first uses for HeLa cells was the development of the polio vaccine. What would have happened — how many lives would have been lost? — had the use of her cellular matter gotten tied up in the kind of intellectual property disputes that are all too common nowadays?
The mind reels. Just look at Silicon Valley; it’s practically unknowable how much money has been expended and intellectual talent squandered on drawn-out patent fights over stuff like who first came up with the one-click interface for shopping on the internet. Our broken patent protection system also contributes to pharmaceutical drugs that cost five-figures for a single pill (a uniquely American phenomenon). There are many tough questions that have to be considered when contemplating a system for rewarding and encouraging innovation, but it’s fair to ask if the system isn’t broken when (1) people can’t afford the products of industry genius and (2) so much effort is wasted on walling off the rewards of innovation for the sake of the few rather than for the many. Henrietta Lacks’ sad story turned out to be boon for humanity. But the concept of a shared public good isn’t one that should rest exclusively on the metaphorical shoulders of a sharecropper’s daughter from Clover.