Why The Movie About Henrietta Lacks Matters Today
Before the prologue of The Immortal Life of Henrietta Lacks, author Rebecca Skloot devotes a page to these words by Elie Wiesel, from The Nazi Doctors and the Nuremberg Code:
We must not see any person as an abstraction. Instead, we must see in every person a universe with its own treasures, with its own sources of anguish, and with some measure of triumph.
Wiesel reminds medical scientists that the people who’ve trusted them with their bodies or samples, or who don’t trust them but live in circumstances like Nazi concentration camps, or in less obvious places of horror―where consent is not so much reality as a neglected idea―are individual persons, each deserving of respect. Wiesel speaks to clinicians, who might forget that the man in the operating room, unconscious, with tubes in his throat and penis, inner organs exposed during surgery, is a human being, and not just “a case,” to be treated with dignity.
HBO, The Immortal Life of Henrietta Lacks
Renée Elise Goldsberry as Henrietta Lacks
The Henrietta Lacks movie reminds scientists and doctors what shouldn’t need stating: that she was a real person. Henrietta, whose skin was dark, received care on the colored ward at Johns Hopkins Hospital before dying from cervical cancer in 1951. She lived near Baltimore with her husband and four of her five children. She didn’t know that doctors placed her tumor cells in a laboratory dish, where they divided and grew, enabling research that could not previously be accomplished.
Ethical issues swirl through The Immortal Life of Henrietta Lacks. Those issues―consent for use of patients’ samples in medical research, possible compensation for donors, racism and racial barriers in healthcare―can get so thick in academic discussion, you might miss the story’s core: the tragedy of a 31-year-old woman who suffered pain before succumbing to recurrent cervical cancer. Henrietta died because the original HeLa cells kept growing and spread inside her young body. She left behind a family with problems, children who needed her.
What’s most compelling about the new Henrietta Lacks movie is that it illuminates the patient, Henrietta Lacks, and renders her unforgettable. Rebecca Skloot’s important book did this, too. But film can be more powerful in imprinting the image of a young mother, beautiful and vulnerable. The life Henrietta lived escaped the memory of her children, and for the most part didn’t enter the headspace of scientists who used her cells.
If you watch the HBO movie, you’ll see a beautiful woman who strolls out with her family, visits carnivals and squeals from high on a Ferris wheel. She dresses up, paints her nails red and goes dancing, two-step, with cousins. Henrietta’s relatives recall the slow-cooked collard greens and rice pudding she prepared, among other tasty treats, and how graciously she served meals. She was very much alive!
Three women take central roles in the film version: Henrietta, whose malignant illness, premature death and legacy are what led the journalist, half a century later, to pursue her story; Deborah Lacks, Henrietta’s daughter in middle age, who desperately seeks to find out whatever she can about her long-deceased mother, and to learn about the cells; and Rebecca Skloot, the young and persistent journalist who spends most of ten years tracking down information about Henrietta’s life and publishes the book.
Snippets of Henrietta, quietly and glowingly portrayed by Renée Elise Goldsberry (who played Angelica Schuyler Church in the original Hamilton), appear in flashbacks. They’re excellent. If I could change the film in one way, I’d dial up these scenes with Henrietta, and include more of her life as a patient.
Oprah Winfrey fills the role of Deborah. Her character is not easy to deal with, moody and maybe manic, scary at times. She walks with a cane. It turns out that Deborah was raped as a teenager while living with an abusive aunt and uncle. One of her brothers did jail time after killing someone; it turns out he was beaten, often, in childhood. Deborah’s grandsons are troubled kids. The Lacks family is warm, and in some ways together. But there are violent and near-violent scenes that discomfit the journalist in the movie, and viewer.
The ugly family scenes are necessary; they support the story’s truthiness. They also convey the reality that patients―people who might be called “participants” or “subjects” in research―are like everyone else, including doctors: flawed and sometimes illogical, stubborn or mind-changing or greedy or self-destructive, with problems not all of which they tell you. Those very human attributes may be considered a headachefor researchers seeking consent, but investigators need to grapple with those problems, and not skip them over for convenience.
The actress Rose Byrne convincingly plays Rebecca Skloot. She is nervous and appears uncomfortable in some scenes with Henrietta’s family, but not always. Part of what took so long in creating this film is that book’s narrative was restructured to include the journalist in the story. I’ve read that Skloot, the journalist, was hesitant about making this change. But I think her presence in the movie adds to the story’s ethical message. Because Skloot, who is white and from another place, never seems to 100% fully gain the family’s trust, although she does get through, maybe to the 90% mark, which is a lot. Not that you can measure trust in percentage points. But Skloot gets far closer to the family than would most journalists, and closer to them than would almost any doctor.
Skloot’s presence in the movie can be likened to a doctor who’s treating a patient of another culture who has a serious medical condition about which the patient and family need make many decisions. Distrust of white doctors, who may be perceived as making lots of money and of using their patients to do so (and who may indeed be doing that), is a common barrier to medical care. Doctors, for their part, perhaps not being fully comfortable amid a patient’s family banter, and meals that seem “foreign,” who may hold distinct values or have less education, may fail to relate to their patients. They can't or don't take the trouble to explain situations in ways that permit a patient or family to understand what is happening, and what choices they have.
The HBO portrait is helpful to all patients, because Henrietta appears so vibrant and deserving of good care and of explanations to her family.
Today, cervical cancer is largely preventable. The NCI estimates there will be 12,800 cases this year, and 4,200 U.S. deaths from the disease. These numbers are way down, by almost 50% since 1980, and that progress is almost entirely attributable to detection of non-invasive and early cancers by Pap smears or, more recently, human papilloma virus testing of cervical samples. In the 1940s and 1950s, cervical cancer was a leading malignant killer of U.S. women. Worldwide, it remains so, because women remain vulnerable to the disease but don’t have access to gynecological care.
Vaccines against HPV have significantly lowered rates of infection in young women. The benefits of those vaccines, in reducing the future occurrence of cancers and deaths like that of Henrietta Lacks, reflect progress in science that depends on the cooperation and understanding among doctors, researchers, patients and their families, now.