On Saturday evening I, along with millions of other people, watched the premiere of Auntie Oprah’s film, The Immortal Life of Henrietta Lacks,” on HBO. At the beginning of the film, I was nestled in my bed, eating a bowl of popcorn. I knew the premise of the movie and seriously, who doesn’t love a good Oprah Winfrey performance (and let me just say, as usual, she delivered). But by the middle of the film, I was no longer lying comfortably, instead I was sitting upright, slightly teary-eyed...and by the end, there was popcorn on the floor and I was standing in front my television, gripping my remote tightly and shaking my head in disbelief. I immediately scrolled through Facebook to see if I was alone, and just as I imagined, I wasn’t.
Several people with “skin like mine” who watched the film felt just like I did. Don’t get me wrong, the movie was well done and the acting was superb, but it did something that I wasn’t expecting. It evoked emotions that are still somewhat difficult for me to articulate. Simply put, I hurt for Henrietta Lacks and her family.
“Like many Black women, Henrietta Lacks was an unknown hero.”
As I watched the movie, I thought to myself, why didn’t I learn more about Henny (“Henny” because she’s now my auntie in my head) in school? From grades 7-12, I attended a health sciences magnet school. In college, I was a biology major. To say I know a little something about HeLa is an understatement, but I honestly don’t recall hearing much about the owner of those magical cells. Yes, magical. “Black girl magic” isn’t just a hashtag, you know. But I digress. Like many Black women, Henrietta Lacks was an unknown hero who, thanks to the book and subsequent film about her life, is no longer an obscure entity. However, unlike the three heroines in one of my favorite movies, “Hidden Figures,” Henrietta’s story did not have such a happy ending.
Henrietta was diagnosed with cervical cancer and died from the disease at the age of 31. As a result, she left a special legacy and five children whose lives would never be the same. But it wasn’t her untimely death that shocked me as that was quite common back in the day. No, it was the blatant disregard for her basic human rights that I found so appalling. To which human right am I referring? Henrietta was not given the right to consent, and even though it was not required at that time, ethically, she should have been asked for the use of her cells.
“Henrietta’s cells were stolen. Her cells were taken and used to advance research and medical practices and she went virtually unknown for years.”
Picture this. You’re a young woman, lying in a hospital bed, gravely ill and undergoing treatment for a disease you don’t fully understand. There are doctors and nurses coming in and out of your room. They are talking to you, smiling at you, and poking you with needles. They spread your legs to take a piece of your cervix so they can figure out how to “fix” you. It’s ok because you trust them. But not one time do they ask you if they can use the cells from your body to learn more about your disease. No one takes the time to explain to you how the use of your cells could possibly benefit others for years to come. And after you pass away, no one consults your grieving family members to obtain permission to continue the use of your cells.
“Mrs. Lacks, we need your permission for something. Can we use the cells from your biopsy for research?” “There’s a possibility that you could help us understand this disease better. You could also be helping others.”
I imagine a conversation like that with Henrietta would have sufficed, but that didn’t happen. So let’s not sugarcoat it. Henrietta’s cells were stolen. Her cells were taken and used to advance research and medical practices and she went virtually unknown for years. And to make matters worse, her family still has not been properly compensated. Unbelievable, I know. Now, some may wonder what’s so great about Henrietta’s cells anyway. Why does her family deserve anything after all of this time? Well, let me explain.
Henrietta cells, i.e., HeLa, were unique. You may say she was an ordinary woman with extraordinary cells. HeLa cells are an immortalized cell line, meaning the cells can be reproduced infinitely in a lab. Her cells have aided in the advancement of science and modern medicine tremendously. For example, the cells were used to develop the polio vaccine. In addition, they have been instrumental in HIV and cancer research. Oh, but it doesn’t stop there. These cells even paved the way for in vitro fertilization, and the list goes on and on. And while I am thankful for the progress Henrietta’s cells have afforded medical research, the treatment of Blacks as guinea pigs in the past has left a very bitter taste in my mouth.
“I wonder just how many stories like Henrietta’s and the Tuskegee Experiment are still untold?”
Real talk. What occurred to Henrietta wasn’t an isolated incident. We all know about the Tuskegee Experiment — the time scientists used Black men as lab animals to study the effects of Syphilis — but I wonder just how many stories like Henrietta’s and the Tuskegee Experiment are still untold? And why have the contributions of so many Blacks been undervalued or erased from the history books? And lastly, why is health equity still so difficult to attain in 2017. What do I mean by that last question? Well, for example, Black women are still dying from breast and cervical cancers at higher rates than other ethnic/racial groups. The same goes for Black men and prostate cancer. I could go on but you get the point. The fact is, I don’t know the answers to these questions, and as a public health professional, I am working everyday to identify solutions. But what I do know is this, modern medicine has a huge unpaid debt. The creditors are the descendants of Mrs. Henrietta Lacks, and I, for one, think it’s time to pay up.