By now you may have already seen ‘The Immortal Life of Henrietta Lacks’ movie made by HBO, starring Oprah Winfrey, Rose Byrne, and Renee Elise Goldsberry. It recounts the true story of how medical journalist and author Rebecca Skloot (played by Byrne) tracks down Henrietta’s daughter Deborah in order to write the profound story of what her mother went through. A story that has literally changed the face of modern medicine and science, the origins of which have largely been hidden from mainstream society for decades, until now.
While the movie shows Rebecca’s journey to unearthing the story of Henrietta and the often fraught relationship she formed with the rest of the Lacks family during this time, it is well getting to know her actual book to fully understand why the life of Henrietta Lacks is so important today. And if you don’t have time to sit down and read it in full, Audible’s 30 day free trial means you can download and listen to the audiobook while you go about the rest of your day.
We totally understand that barely 100+ days into the clown show that is the Trump administration, you may be starting to get a little #resistance fatigue, and feel powerless in the face of such opposition. But this is where history can play an important role in keeping us motivated to stay the course. Over the past couple of years we’ve seen documentaries and films such as ‘Loving’, ‘Selma’, ‘The 13th’, ‘I am Not Your Negro’, and now ‘The Immortal Life of Henrietta Lacks’ provide us with enough information to keep us angry and frustrated, and enough history to show that dialog is vital, and these profound pieces of American history can help provide a road map for the future.
‘Henrietta Lacks’ tells the story of a young, poor black woman who died at the age of 31 from cervical cancer. While the mother of 5 was undergoing treatment as Johns Hopkins University in 1951 (one of the few hospitals that would even treat black patients at the time), a sample of her cells were taken form her tumor and her cervix without consent and used for medical trials. After she died, more cells were taken from her corpse. The family never knew what was happening at the time. Doctors found that Henrietta’s cells were growing in a phenomenal way, and they were able to conduct experiments that weren’t previously possible.
The pivotal aspect of this story is the way Henrietta’s cells were given without permission which then became one of the most remarkable breakthroughs in modern medicine. If she were not poor and black at point in America’s segregation period where black people did not have the same rights as others, this story would not be told today.
The African American population, even to this day, has a fraught relationship with the medical system, where black women are often not given the same kind of autonomy, dignity and opportunity for healthcare in the same way white women are. This is shown clearly in the way black women are more likely to die from maternal complications 3.5 times more than white women today, an epidemic stemming from inadequate and unequal healthcare access.
In a report on the Henrietta Lacks story by the Women’s Media Center, the HeLa cells (named after the first two letters of her first and last name in order to conceal her identity) revolutionized science.
“[They contributed] to advances in cloning, in vitro fertilization, chemotherapy, and treatments for Parkinson’s disease, AIDS, herpes, influenza, and polio. They even traveled into space on one of the first missions and yielded five Nobel Prizes for related research. No other human cells have ever been as viable in lab settings,” writes Yanick Rice Lamb.
For 50 years Henrietta’s family had no idea their mother was literally the mother of revolutionary science and medicine, it wasn’t until Johns Hopkins started reaching out to them for more samples that they started to become aware.
When Rebecca started interviewing Deborah for the book, the daughter of Henrietta expressed her own dismay, confusion and anger at what had transpired.
“I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense. People got rich off my mother without us even knowin’ about them takin’ her cells, now we don’t get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don’t got it in me no more to fight. I just want to know who my mother was,” she said.
There is such a conflicting agony in her voice, as she and the rest of her family feel as if they were pawns in a game, one which ultimately became incredibly positive and life-changing for millions of people. But as the Women’s Media Center points out, there is a long history of suspicious from the black community when it comes to healthcare, which have made them reluctant to participate in clinical trials.
There was the Tuskegee syphilis experiments in which black men unknowingly went untreated, all in the name of science, and the rumor that Johns Hopkins would at one time “snatch” people off the street to conduct experiments on them at night, without their permission. All the Lacks’ family wanted was a right to say what happens to their loved ones, and right to privacy.
But the social justice angle of this story has come up against political and lobby interests. Henrietta’s cells were purchased by doctors and researchers all over the world. In 2013, German researchers publicly published the HeLa genome sequence, and the Lacks’ family complained it would allow people to look into their own health. The sequence was subsequently withdrawn from the public. Lobbyists for biotech companies and university researchers have argued that stiffer consent rules to protect volunteers in federally funded studies (which were created and inspired by the HeLa case) would add unnecessary red tape.
It is a fascinating intersection of science, race and social justice, a story like no other. Yanick Rice Lamb says the Henrietta Lacks legacy goes far beyond her “immortal” cells, and speaks to many issues we are dealing with today in our political and social context.
“Her life and death are helping to draw attention to the need for heightened sensitivity and cultural competency among medical professionals and researchers; greater transparency by pharmaceutical and other companies; consistency and clarity in obtaining informed consent; deeper discussions of ethical and moral behavior; and more diversity across the board.”
This is a fascinating historical account which we highly recommend. Listening to an audiobook means you don’t have to stop what you are doing throughout your day, yet still be inspired knowing that the more stories like this that are unearthed from the past and shared with the public, they will become an ingrained part of our future. You can hear an Audible sample of the ‘The Immortal Life of Henrietta Lacks’ below, as narrated by Cassandra Campbell and Bahni Turpin.
This is a sponsored conversation written by us on behalf of Audible. The opinions and text are all ours.