In our last post, we discussed two primary topics. Oprah is starring in a new movie from HBO called The Immortal Life of Henrietta Lacks. The previous article also spent some time introducing the significant contribution made to medical science by Henrietta Lacks. We also heard from Oprah Winfrey; she relayed her thoughts about her involvement in the new movie from HBO, The Immortal Life of Henrietta Lacks. We will hear more from Oprah on the subject later in this article and the next one.
Let’s dive into the science.
What are HeLa cells?
For many years, scientists and researchers searched for human cells that would continue to live outside of the body continuing to grow and reproduce; this is called an immortal cell line. Prior to the cells removed from Henrietta Lacks, researchers had had no luck in making such a discovery. But Henrietta’s cell line lived and bear her name – HE(nrietta) LA(cks).
HeLa cells play an invaluable role in medical research. Jonas Salk used HeLa cells in his research to test the first polio vaccine. HeLa cells have gone into space. They have been exposed to nuclear testing. HeLa cells have advanced our understanding of many diseases like cancer and HIV.
HeLa cells have been used to test or develop treatments and medications for:
- Hormone replacement
And for non-medical purposes, HeLa cells can also used to test the effects of cosmetics to eliminate the need to use laboratory animals.
Because of her immortal cell line, Henrietta Lacks should be known as the “mother of modern medicine.” According to Rebecca Skloot:
“more than 60,000 scientific articles had been published about research done on HeLa, and that number was increasing steadily at a rate of more than 300 papers each month.”
Modern Medicine’s Issues Surrounding HeLa Cells
Because so much of modern medicine would not have been possible without HeLa cells, it’s important to look at the issues surrounding her donation. Previously, we discussed how these cells were harvested from Henrietta Lacks without her knowledge or consent. This lack of consent opens the door to a lot of scientific discoveries but without compensation. And that is an extremely complicated issue.
Meet Dr. Alondra Nelson
Oprah invited Dr. Alondra Nelson to join the call to speak to these issues. Dr. Nelson is the Dean of Social Science at Columbia University and the incoming President of the Social Science Research Council. You may explore her ideas more thoroughly in Dr. Nelson’s ground-breaking book, The Social Life of DNA: Race, Reparations and Reconciliation After the Genome. Her book really shook up the conversation on the topic of race and genetics.
Some Perspective on Henrietta Lacks’s Contribution to Medical Science
Dr. Nelson addressed a few of the genetic issues on the call with Oprah. She was asked to provide a bit of perspective on why Henrietta Lacks matters. She said:
Henrietta Lacks matters because she offers us the untold story of African-Americans’ contribution to science and bio-medicine that often go untold. In 1951, at a time when our hospitals, our medical schools, and our nursing schools were segregated, there were people that wanted to make contributions and African Americans weren’t able to do so.
Here we have, untwittingly, and not by her own knowledge, Henrietta Lacks making an invaluable contribution. We now know an immortal contribution. These HeLa cells are basically cancer cells. They are cells that can kill, but they are also cells that multiply and grow quickly. And that led to significant developments in laboratory research. So within 3 years, by 1951, the cells had been used by the famous scientist, Jonas Salk, to develop the Polio Vaccine.
Over the next 60 years, the cells have been used to increase our understanding and research of cancer, HIV, AIDS, they are used to test anti-tumor vaccines, and people have made money from the use of these cells. There’s over 10,000 patents involving HeLa cells.
So it’s not an understatement to say that certainly 20th century medicine, and now 21st century medicine, owes a great deal to Henrietta Lacks and her sacrifice.
It’s not an understatement to say that certainly 20th century medicine, and now 21st century medicine, owes a great deal to Henrietta Lacks and her sacrifice.
Understanding Genetics and Precision Medicine
Dr. Nelson also addressed how to help the community better understand the benefits of clinical research and bio-banking in the era of genetics and precision medicine. She said:
Given the history of scientific racism, genetics has always been a complicated space, particularly for African-Americans. It was genetic research that tried to make pseudo-scientific, spurious claims about black bodies and black biology, and its distinctions from other types of bodies and the genetics of other people.
Storytelling as a tool to understand science
Dr. Nelson posits the idea that storytelling allows us to more easily make sense of complicated issues. She says:
So it’s a very complicated space, and I think one of the powerful things about both the book by Rebecca Skloot and also the movie is how stories help us to make sense of complicated spaces and complicated paradoxes like the intersection between race and genetics.
And so the Lacks story shows us how those clinical trials can be dangerous – given her cells were taken without her knowledge. But also how particularly, in this moment, if they are done with permission and done with consultations with people being fully educated about what’s happening. People knowing when they go to get any kind of examination or they go to the hospital, those forms that they are signing are giving permission to use their cells in research.
What I hope that the HBO film will do (and the book did for certain), is help us be able to talk about the complicated give and take of being involved in research. I don’t think there’s an easy answer and we often have to decide these things for ourselves.
Thankfully, we have great storytellers like Oprah Winfrey to help us make sense of complicated materials. And that’s exactly what The Immortal Life of Henrietta Lacks does. It examines a complicated issue, and helps us to make sense of it in a way that allows us to understand it’s magnitude.
So let’s hear what Oprah had to say about Henrietta Lacks’s contribution to science.
The Lingering Effects of Henrietta Lacks’s Story on Medical Research
(As before, Oprah’s answers will be shared in italics to make it easier to read.)
Let’s talk about African-Americans in medical research. Do you think there will be lingering effects of Henrietta’s story in terms of creating a pejorative view of the medical establishment to African-Americans? How can we overcome the distress of the establishment that the Henrietta Lacks story has caused?
I think everybody needs to know that you can still have your cells taken and used for research and you not know it. I think the law now says that they cannot take your cells and have your name on your cells and you not know it. But I think cells are still being taken and used for research.
I think in many cases, Johns Hopkins has taken a lot of heat for sharing those cells with the world. But they maintain, and I believe, they never made a profit from the cells. It’s all the drug companies that have now made a profit from the cells.
I feel that the family being upset that they never received any compensation for the cells is a valid feeling. I mean, when you have family members who cannot afford healthcare, and billions, I mean Billions, of dollars have been made from your mother’s cells, I would be upset too. Trying to determine the first drug company and all of the millions and millions and millions of variations of ways that the cells have been dispersed – that’s a lawsuit I wouldn’t want to be in.
That’s an ongoing battle. I do understand that there are some family members that are upset- they don’t even have money to get their teeth fixed and yet, people are making money off of their grandmother’s cells.
Why is it important to fight for stories like this?
The story of how author Rebecca Skloot built an audience for her book is in itself its own story. She built her own network, covered the ground like glue, and she’s responsible for moving her way onto the New York Times bestseller list. Is there a lesson in that model when it comes to building an audience? And I would add, as seen in Rebecca’s and your work, why is it important to fight for stories like this?
Well, you know, my whole life has been about lifting us up. First it was about lifting myself and being a light. I come from this background of studying every black woman’s story whose story I could get my hands on. I grew up reciting Fannie Lou Hamer, Sojourner Truth and doing Easter speeches in the church. And every time there was any story about a black woman, I would try to learn it and memorize it, and share it with other people.
I always saw myself through these women. That’s why the very first time I did the movie The Color Purple, I had not had one acting lesson in my life. But I knew that character of Sophia because of Fannie Lou Hamer, because of Sojourner Truth, because of my aunts, because of the women I saw sitting in the church in the pews every Sunday.
I was familiar with that woman, that character, that kind of strength from African-American women. It’s important that every time I find a story that I hadn’t heard where a person of color has made a mark in history and nobody knows about it, I feel strengthened by that. I feel strength from their strength.
And I want to share that because I believe that other people seeing the normalcy, how normal Henrietta Lacks and Debra Lacks were, but yet what an extraordinary contribution they both were able to make.
Ordinary People Do Extraordinary Things
— The Awesome Muse (@theawesomemuse) April 12, 2017
It’s important because you can then see that in yourself. You can see that ordinary people can do extraordinary things through their faith, their belief and through their hard work. So I am a believer of telling stories that shine a light on the goodness of us.
Save the Date to Watch The Immortal Life of Henrietta Lacks
Be sure to mark your calendar for April 22nd. HBO will air The Immortal Life of Henrietta Lacks on April 22nd at 8:00 pm EST. You don’t want to miss this moving story not only about science, but also about one’s search for family and identity.
Watch the official trailer:
This post is the second in a series of three articles sharing Oprah’s wisdom and experience related to The Immortal Life of Henrietta Lacks. You can find the first and third installations here on The Awesome Muse:
- Part One: Interview: Oprah Stars in The Immortal Life of Henrietta Lacks
- Part Three: Support Oprah’s Movie, The Immortal Life of Henrietta Lacks
Dr. Alondra Nelson’s book, The Social Life of DNA: Race, Reparations, and Reconciliation After the Genome, is available on Amazon. If you are curious to learn about intersectionality issues related to race and genetics, her book is a phenomenal place to learn more.
You may also enjoy reading Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks. The movie has been adapted from her work.