There's no question that U.S. Government institutions and systems give marginalized communities enough reason to question new, innovative medical procedures. But Black Americans are especially wary of taking the government's word when it comes to vaccines and physicians.
Many events throughout U.S. history make it easy to understand why Black communities, in particular, are reluctant to be among the first to receive a new vaccine.
Two notable examples are the Tuskegee Experiment and the Henrietta Lacks case, which made critical contributions to the Salk polio vaccine research and testing.
Much has been written about the Tuskegee Experiment. In this post, I am proud to highlight the lesser-known, astonishing story of Henrietta Lacks.
For decades, scientists collected tissue samples from patients without consent, searching for cells that could live outside the human body. In 1951, a woman entered a hospital in Baltimore, Maryland, and everything changed.
"There isn't a person reading this who hasn't benefitted from Henrietta's cells, which were taken without her knowledge in 1950." - Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks." This 2017 quote is from an article Rebecca wrote at history.com.
I recommend you read the full article cited below and the extraordinary book. There is also an excellent movie based on Rebecca's book, also cited below.
Rebecca Skloot was introduced to Henrietta's daughter, Deborah, by a physician from Morehouse School of Medicine in Atlanta who had the Lacks family's trust. After many phone calls and questions, Deborah agreed to help Rebecca research her book, including introductions to her brothers, David (Sonny) and Lawrence.
Deborah Lacks Pullum was the fourth child of Henrietta Lacks and David “Day” Pleasant. Her efforts to find out more about her mother, combined with other struggles, gravely affected her health. Deborah died in 2009.
The following post includes edited excerpts from Rebecca's first-person account at history.com.
Rebecca Documents an Immortal Life:
When I first called Henrietta's daughter Deborah with hopes of writing a book, I had no idea how deep the story ran. In the 1970s, Henrietta's children were used in research without consent, their medical records released and published without permission, and much more.
I created The Henrietta Lacks Foundation because I didn't want to be another person who benefitted from the cells without doing something in return.
All I knew when I spoke to Deborah was that HeLa cells were one of the most critical advances in science and that they'd come from an unknown Black woman. For decades I was obsessed with the question of who Henrietta was.
There's a photo on my wall of a woman I've never met; its left corner is torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late 1940s, and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her—a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is "Henrietta Lacks, Helen Lane or Helen Larson."
No one knows who took that picture, but it's appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She's usually identified as Helen Lane, but often she has no name at all. She's simply called HeLa, the code name given to the world's first immortal human cells—her cells, cut from her cervix just months before she died.
Her real name is Henrietta Lacks.
I've spent years staring at that photo, wondering what kind of life she led, what happened to her children, and what she'd think about cells from her cervix living on forever—bought, sold, packaged, and shipped by the trillions to laboratories around the world. I've tried to imagine how she'd feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity or that they helped with some of the most crucial advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I'm pretty sure she would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.
I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen sitting in a community college biology class while, at the same time, my father was taking part in a clinical trial.
I was experiencing the ups and downs of that research: The hope that it will help, the fear of what might happen, and in my dad's case, the pain of research going wrong. My father gave his consent, so his story is, of course, very different from Henrietta's. I became obsessed with the individuals behind the research and how it impacts them and their families.
During one class, my biology instructor, Donald Defler, pointed to two diagrams on the wall behind him from an overhead projector. They were schematics of the cell reproduction cycle, but to me, they just looked like a neon-colored mess of arrows, squares, and circles with words I didn't understand. I was completely lost.
He wanted us to understand that cells are amazing things: There are about one hundred trillion of them in our bodies, each so small that several thousand could fit on the period at the end of this sentence. They make up all our tissues—muscle, bone, blood—which make up our organs.
"We learned that by studying cancer cells in culture," Defler said. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS.
Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before she died, a Johns Hopkins surgeon took samples of her tumor and put them in a petri dish. Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta's were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.
The original discovery had no patent, and the cells were provided to research laboratories at no cost. In 1954, Microbiological Associates began selling HeLa cells, which gave birth to the biomedical industry.
Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease. They've been used to study lactose digestion, sexually transmitted diseases, such as AIDS, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers. Their chromosomes and proteins have been studied with such detail and precision that scientists know their every quirk. Like guinea pigs and mice, Henrietta's cells have become the standard laboratory workhorse.
"HeLa cells were one of the most important things that happened to medicine in the last hundred years," Defler said. Then, matter-of-factly, almost as an afterthought, he said, "She was a Black woman." He erased her name in one fast swipe and blew the chalk from his hands. Class was over.
As the other students filed out of the room, I sat thinking, That's it? That's all we get? There has to be more to the story.
I followed Defler to his office. "Where was she from?" I asked. "Did she know how important her cells were? Did she have any children?" "I wish I could tell you," he said, "but no one knows anything about her."
This experience was the beginning of Rebecca's quest to learn more. Her investigation unearthed the disturbing story that followed Henrietta's death. I encourage you to follow her lead and dig deeper. It's a fascinating story of loss and unintended consequences.
Johns Hopkins Will Name New Building for Henrietta Lacks
Edited excerpt of Reporting by Lillian Reed in The Baltimore Sun on October 8, 2018:
The Johns Hopkins University will name a new interdisciplinary building after Henrietta Lacks, a Baltimore woman whose cells were the basis of research for numerous modern medical breakthroughs.
According to a university publication, the building is planned for Hopkins' East Baltimore campus and expected to complete in 2022.
"The building will stand as an enduring and powerful testament to a woman who was the beloved mother, grandmother, and great-grandmother to generations. She was also the beginning of miraculous discoveries that have changed the landscape of modern medicine and that have benefited the much larger family of humanity," said Ronald Daniels, president of Johns Hopkins.
Henrietta Lacks Enhancing Cancer Research Act of 2019
On March 28, 2019, Representative Elijah Cummings introduced a bill that requires the Government Accountability Office to complete a study reviewing how federal agencies address barriers to participation in federally-funded cancer clinical trials by individuals from underrepresented populations and provide recommendations for addressing such barriers. The bill passed the House on December 9, 2020.
On December 10, 2020, the House Resolution was received in the Senate, sponsored by Senator Chris Van Hollen, and referred to the Committee on Health, Education, Labor, and Pensions. On December 18, the Committee discharged the bill by Unanimous Consent. It passed the Senate without amendment, also by Unanimous Consent.
Edited excerpt from The Henrietta Lacks Enhancing Cancer Research Act of 2019 that mirrors the House Resolution language approved by the Senate:
Not later than two years after the date of enactment of this Act, the Comptroller General of the United States shall complete a study that reviews what actions Federal agencies have taken to help address barriers to participation in federally-funded cancer clinical trials by populations that have been traditionally underrepresented in such trials, and identify challenges, if any, in implementing such actions.
As of this writing, the Senate is pending the Comptroller's report for their committee's review.
Before I saw the movie and read Rebecca's book, I had never heard of Henrietta Lacks. As I watched events playing out this year, most recently the reporting on new vaccines, I couldn't help but think of Henrietta and her family.
Their story is inextricably linked to the racial injustice protests after the murder of George Floyd, to the widespread inequality in our economic and healthcare systems, which are exacerbated by a pandemic, and the efforts of some to suppress the votes and voices of Black and Brown Americans.
My heart breaks for our country, that the work to achieve the ideal of a "more perfect union" seems further away now than ever before. Like me, you may be looking at 2021 for the hope we need to continue the peaceful work toward that ideal. Not only to honor our country but to honor and respect the sacrifices made by those still trying to find their rightful share of the American Dream.
2017 Oprah Winfrey/HBO Movie – “The Immortal Life of Henrietta Lacks.”