Celebrating HERstory, HER ‘HeLa’ Cells, HER Humanity and HER Legacy
By Deleso A. Alford, J.D., LL.M.
On August 1, 1920, Henrietta Lacks was born as Loretta Pleasant in Roanoke, Virginia. This year will mark 104 years since she was born and her family’s over 70 year pursuit of justice for the taking of her cells without consent, (now widely known as ‘HeLa’ cells- scientists’ intentional efforts to hide her human existence by only referencing the first two letters of her first name -Henrietta (“He”) and the last two letters of her last name- Lacks (“La”).
In 2012, I wrote a seminal law review article entitled, HeLa Cells and Unjust Enrichment in the Human Body which served as a catalyst and theory of the case for the historical Henrietta Lacks’ Estate litigation for the “conscious choice to sell and mass produce the living tissue of Henrietta Lacks, a Black woman, grandmother, and community leader, despite the corporation’s knowledge that [her cells]were taken from her without her consent by doctors at Johns Hopkins Hospital and a racially unjust medical system” filed by world-renowned Civil Rights lawyers, Co-lead counsels Ben Crump, Christopher Seeger, and their legal teams.
In the article, I posit that, “Mrs. Lacks – raced by social construction and gendered by biology for all mankind stood at the crossroads of public health care (circa 1951) – in an apartheid state of reality in the United States and ploughed back into medicine. The biological uniqueness of her cells allowed scientists and researchers to benefit society as a whole. In [the] essay, I place Mrs. Lacks’ parts (tissue cells) back into her body to raise a claim of unjust enrichment; discuss the ongoing debate as to whether the ownership of cells is a legally protected interest; explore historical facts and apply them to eke outjustice for Mrs. Lacks and her descendants. “
My scholarly focus creates a bridge for legal and medical education by telling stories—what I refer to as “HER stories”—the unique and particularized lived experiences of Black women intersecting with health care and research.
The HER story of Mrs. Henrietta Lacks
In 1951, Mrs. Henrietta Lacks, a 31-year-old wife, mother of five children surrendered her Black body for treatment of cervical cancer to the legally segregated ward of Johns Hopkins. Mrs. Lacks’ surgical treatment exceeded her signed operation permit when the surgeon on duty “shaved two dime-sized pieces of tissue from her cervix: one from her tumor, and one from the healthy tissue” for research purposes without permission or consent. Oftentimes overlooked in the telling of HER story, during that time it was the practice of Johns Hopkins to apprise women of the risks of infertility before the accepted cervical cancer treatment of putting lead strips inside the vagina.
To add insult to injury, Mrs. Lacks’ raced, classed, gendered body was never informed about the risk of infertility. Her medical records indicate that had she been told [of the risks] before, she would not have gone through with treatment. This speaks volumes as to why Mrs. Henrietta Lacks’ dignity and respect must be restored.
The media was allowed to erroneously attribute her cells to “Helen Lane”, “Henrietta Lakes”, “Helen L.” and “Helen Larson”, but never as Henrietta Lacks. It was not until the 1970’s (twenty-five years after her death) that Lacks family members found out about their mother’s cells living and growing in research labs.
From the very onset, Johns Hopkins framed a story that disassociated Mrs. Henrietta Lacks’s cells from her body. The fact that their telling of Mrs. Lacks’ story begins with the disassociation of her existence as a human being to focus on the remarkable research significance of the immortal cells extracted from her body is historically reminiscent of how black enslaved women’s bodies were deemed as chattel property, with a forced reproductive capacity “to create and maintain a cash crop of human labor.” The taking of Mrs. Lacks’ cells for profit, without permission or consent is akin to treating her cells like chattel property.
Here, it should be noted that in response to the telling of Mrs. Henrietta Lacks’ story by others – HERstory is told by her own family members along with their lived experiences in pursuit of justice on her behalf. As grandson Alfred (Lacks) Carter puts it: [t]o lead our family in reclaiming our story, Uncle Lawrence co-authored HeLa Family Stories, in which he shares his firsthand descriptions of daily life with his mother, Henrietta. Uncle Lawrence gives a vivid picture of the woman who brought HeLa cells to the world.
Mrs. Henrietta Lacks’ last surviving son, Lawrence Lacks and his wife, Bobbette share their own stories from their perspective to shed light on the life of their mother (mother-in law) in their co-authored short memoir because as he states, “I want everyone who knows about my mother’s cells to know her as a person, too. I want everyone to get a sense of her sweetness and humor and spirit in spite of all of the hardship’s life dealt her.”
The Lacks’ family efforts to control their own narrative was not met without struggle. According to grandson Ron Lacks: There have been so many people to come in and out of our lives, claiming that they will help the Lacks family. They will come in claiming to care about my grandmother and her legacy. Then, they would promise to help us get the answers that the family deserved. Truthfully, I’ve lost count of how many crooked people have tried to make money off my grandmother’s pain.
Like so many others, I became aware of Mrs. Henrietta Lacks’ story as told by Skloot’s New York Best Seller book, “The Immortal Life of Henrietta Lacks.” Notwithstanding Author Skloot’s personal observation surmised in her 2010 book’s Afterword that, [a]s for the Lackses, they have few legal options. They couldn’t sue over the cells being taken in the first place for several reasons, including the fact that the statute of limitations passed decades ago.” Though it would take over a decade, the Lacks family did in fact sue—with the help of our nation’s Trial Lawyer for Justice Attorney Ben Crump and his legal team’s profile of courage to actually file a one count complaint for unjust enrichment after 70 years from the taking of Mrs. Lacks cells without consent. The Lacks family legal representation from nationally recognized civil rights attorney Ben Crump of Crump Law along with Nabeha Shaer, Esq., local Counsel Attorney Kim Parker and renowned plaintiffs’ attorneys, Seeger Weiss partners Chris Seeger and Chris Ayers to pursue justice for them on behalf of Mrs. Henrietta Lacks proved to be a formidable team.
HER ‘HeLa’ Cells
On April 10, 1951, Dr. George Gey, head of Johns Hopkins’ tissue culture research lab stood on national television holding a vial containing Mrs. Lacks’ cells [without mentioning her name] as “he explained that his lab was using [the] cells to find ways to stop cancer. He said, “[i]t is quite possible that from fundamental studies such as these that we will be able to learn a way by which cancer cells can be damaged or completely wiped out.”
Per the first complaint filed on behalf of the Lacks Estate, “Gey introduced to the world the first successfully grown “immortal” human cell line. Indeed, around the same time Henrietta Lacks passed away, Gey appeared on television, holding a vial of Ms. Lacks’ cells, to present his purported contribution to the fight against cancer. Gey introduced to the world the first successfully grown “immortal” human cell line. Scientists all over the world were given HeLa cells for free to conduct their own studies. Because HeLa cells were the first human cells that could survive indefinitely in laboratory conditions, scientists were able to use them for medical research that might well not have been possible without them. In the decades that followed, the HeLa cell line became an essential resource for medical research in labs worldwide. HeLa was used to test the first polio vaccine, to understand the effects of radiation on human cells, to develop treatment for sickle cell anemia, and in countless scientific papers.
It is widely accepted that “since being discovered in the 1950s, experiments on HeLa cells have played a role in developing advances like the polio and COVID-19 vaccines, treatments for cancer, HIV, AIDS, and much more. About 55 million tons of these cells have been used in over 75,000 scientific studies around the world.”
To quote Attorney Ben Crump, “If you have benefited from medical advancements or medical research or taken a vaccine in the last 70 years, then you have a little of Henrietta Lacks in you too.”
HER Humanity
This current “legal fight raises a larger debate about how pharmaceutical companies — built upon the body of Henrietta Lacks — should reconsider their role and restore her humanity that was stripped away.”
Lacks v. Thermo Fisher Scientific Inc., the first complaint filed in October 2021 on behalf of the Lacks family against a multibillion-dollar biotechnology corporation for the taking of Mrs. Henrietta Lacks’ cells without permission or consent, represented the next chapter in the Lacks’ family relentless over 70 year pursuit for justice journey as well as an opportunity for the manifestation of intentional collaborations to tell their story in a court of law.
During the motions hearing to dismiss in the first complaint held before the Honorable Deborah L. Boardman, Baltimore, Maryland, Attorney Ben Crump noted in open court:
- CRUMP: I simply rise, Your Honor, to bring the Court’s attention that restitution law requires common law advancements to serve the overarching purpose to assure wrongdoers cannot retain unjust enrichment. There is a reason we continue to talk about unjust enrichment, Your Honor. Professor Deleso Alford, who’s present in the court, Professor at Southern University, a Black college who submitted an amicus brief.
THE COURT: Thank you for your amicus brief, sir. I’m sorry, there you are, ma’am. Thank you very much.
- CRUMP: She [ ]wrote an article 10 years ago called HeLa Cells Unjust Enrichment in the Human Body, published in the Annals of Health Law, Journal Volume 21, Special Edition where they were dealing with medical racism. And it kind of went unnoticed, Judge, like disregarded. Much in the way courts have found ways to disregard medical racism and in fact racism in many regards.
Attorney Ben Crump’s public attribution regarding the significance of the law review article I wrote a decade earlier to the present case effectively acknowledged my humanity as a scholar.
On August 1, 2023, a historic settlement was reached between the Lacks’ Estate and defendant, two years after the Lacks family filed their initial complaint, filings in opposition to defendant’s motion to dismiss, amicus curiae briefs from The Lawyers’ Committee for Civil Rights Under Law, The National Health Law Program, and The National Women’s Law Center in support of plaintiff’s opposition to dismiss ; Professor Doug Rendleman of Washington & Lee University School of Law and Professor Caprice Roberts of Louisiana State University Paul M. Hebert Law Center in support of plaintiff’s opposition to dismiss and Professor Deleso A. Alford of Southern University Law Center in support of plaintiff’s opposition to dismiss and appeared before Federal District Court judge Deborah L. Boardman for a hearing on the motion to dismiss.
Attorneys Crump and Seeger released the following statement: Members of the family of Henrietta Lacks and Thermo Fisher have agreed to settle the litigation filed by Henrietta Lacks’ Estate, in U.S. District Court in Baltimore. The terms of the agreement will be confidential. The parties are pleased that they were able to find a way to resolve this matter outside of Court and will have no further comment about the settlement.
This historical settlement on August 1, 2023, marks the birthdate of Mrs. Henrietta Lacks and a positive step toward addressing the family’s 70-year pursuit of justice. As aptly put by Attorney Crump, “I can think of no better present on what would have been Henrietta Lacks’ 103 birthday than to give some measure of respect for Henrietta Lacks,” The terms of the settlement will remain private, according to a joint statement between Thermo Fisher and attorneys for the Lacks family. Both parties said they were pleased with the way the matter had been settled.
