Family of Henrietta Lacks lambasts racist medical system amid filing new lawsuit over use of stolen cells

The family of Henrietta Lacks has filed a lawsuit against biotech company Thermo Fisher Scientific for making billions in profit from the "HeLa" cell line. Henrietta Lacks was an African American patient at Johns Hopkins University Hospital. Doctors kept her tissue samples without her consent for experimental studies while treating her for cervical cancer in 1951. Benjamin Crump, one of the lawyers for the case, filed 70 years after her death, calls Henrietta Lacks a "cornerstone of modern medicine," as her cells have since played a part in cancer research, the polio vaccine and even COVID-19 vaccines. Ron Lacks, author and grandson of Henrietta Lacks, laments the fact that the family was never notified when his grandmother died, and that part of what motivates the lawsuit is to ensure "no other family should ever go through this."

This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This is Democracy Now!, democracynow.org, The War and Peace Report. I'm Amy Goodman.

The family of Henrietta Lacks, the African American cancer patient whose cells were taken by Johns Hopkins University Hospital without her consent in 1951, is suing the pharmaceutical company Thermo Fisher Scientific and demanding reparations and the intellectual property of those cells.

Henrietta Lacks was a young Black mother in segregated Baltimore who suffered from metastatic cervical cancer. Doctors took tissue samples from her womb, unknowingly, that went on to become one of the most productive cell lines, leading to groundbreaking research that became a cornerstone of modern medicine, from cancer care and HIV/AIDS treatment to helping scientists produce remedies for several diseases, including the first polio vaccine and even COVID-19 vaccines. Her cells were just known as "HeLa" cells — H-E-L-A — the first two letters of Henrietta Lacks's first and last name. But even her family had no clue about her legacy until more than 20 years after her death.

The new lawsuit denounces a racist medical system and accuses Thermo Fisher of using the HeLa cell line without their consent, while making billions of dollars in profit. The family announced the lawsuit on Monday, 70 years to the day after Henrietta Lacks's death. This is her granddaughter, Kimberly Lacks.

KIMBERLY LACKS: I think about my grandmother, as I said before, laying in that hospital room and how they came in there when she had radiation going through her body, in horrific pain, but all they were concerned about was taking cell tissues from her body. That's terrible.

BENJAMIN CRUMP: Terrible.

KIMBERLY LACKS: And then, on top of that, no one in the family had any idea. They acted like she was alone. They didn't reach out to her husband, her aunt, her cousins — anyone — to let them know what was taking place. That's disgraceful. And that definitely is racism, in my opinion. We was treated — the family was treated, she was treated horribly.

My father, one thing I can say about him is he's a sweet man. And he always said that "Who wouldn't want a pocket full of money? Anybody, everybody wants money. But it's a bigger picture." But he did say to me — and he's sickly, but he was very happy and excited to know that we're finally going to get justice, finally going to get justice for Henrietta Lacks, for his mother.

AMY GOODMAN: For more, we go to Baltimore to speak to Ron Lacks, one of the grandsons of Henrietta Lacks, author of Henrietta Lacks: The Untold Story. We are also joined by one of the family's attorneys, the leading civil rights lawyer Ben Crump.

We welcome you both to Democracy Now! Ben, let's start with you. Talk about why you're suing this particular pharmaceutical company and more about what happened to Henrietta Lacks.

BENJAMIN CRUMP: Surely, Amy. Thank you for having Ron and I to talk about this landmark lawsuit, that is based on the principle of not just simple justice, not just social justice, but this lawsuit is based largely, in part, on this notion of genetic justice — the belief that justice should flow from one generation to the next.

We have sued Thermo Fisher Scientific, and there will be others, who have derived benefit from the immortal cells of Henrietta Lacks 'til this day. And we believe unjust enrichment is the legal theory, that is well established, that allows the estate of Henrietta Lacks to make this claim, that taking her cells was wrong. And the law says if you are unjustly enriched from the wrongdoing, then you should not be allowed to continue to benefit at the peril of the victim, which is Henrietta Lacks.

And that's why her family, her linear descendants, are saying, "Why is it that Henry Ford's family can define his legacy and benefit from his legacy and pass it on to generations of his legacy and unborn children who have yet to come into the world?" But their grandmother, this Black woman, her great contributions to medicine, her story is being told by everybody else. They are saying, "We get the right to define her legacy." Everybody else is benefiting. Pharmaceutical companies are making billions upon billions of dollars from Henrietta Lacks' miraculous [inaudible] — and their family hasn't received —

AMY GOODMAN: Ben Crump, let me ask you — you're freezing a little bit on Skype. But the company, Thermo Fisher, why just one company then?

BENJAMIN CRUMP: Well, we believe there will be others. There were many corporations in the aftermath of George Floyd who made a commitment to social justice, because they watched George Floyd suffer for nine minutes and 29 seconds. I submit that what Henrietta Lacks went through was equal, if not far worse than what George Floyd suffered. So, for all those pharmaceutical companies who have made billions, who made the commitment to social justice in the aftermath of George Floyd, well, you can prove that commitment by doing right by Henrietta Lacks finally, do right by her, say her name, because her life mattered and Black lives matter. You acknowledge that she was, you know, miraculous. Her cells are the cornerstone of modern medicine, with having medical vaccines created from her cells, or developed, with polio, with cancer research. They did in vitro advancements, COVID-19 vaccination —

AMY GOODMAN: What were so special about Henrietta Lacks's cells?

BENJAMIN CRUMP: Well, you know, that's a great question. Everybody should know the name of Henrietta Lacks, I mean, not just people in America but all over the globe, because her cells, for the first time in the history of the world, survived outside of her body. They did this medical experiment in Johns Hopkins, which was tantamount to medical racism, because they used her as a lab rat, as they used many other Black people in that era. But they took the cells. They were trying to see if a cell could survive outside of the body. And nobody to that point could, but Henrietta Lacks' miraculous cells not only survived, but they regenerated every 24 hours and kept regenerating every time they would [inaudible]. The cell would continue to regenerate from another cell. And so, this was a medical marvel for scientists to be able to use research of actual cells.

And so, her cells have saved millions and millions of lives. And so, that's why, as her grandson Ron Lacks says, his grandmother is up in heaven, and she's looking down and saying, "How tremendous it is that my cells are doing all these good things," and she sees all these companies making all this money — I mean, billions of dollars — and she says, "Well, what about my children? What about my family?"

And that's why we're bringing this landmark case, not only based in these principles of civil rights but also in the theory of unjust enrichment, because equity would demand, justice would demand, that Henrietta Lacks' estate is allowed to benefit from the use of her cells. Thermo Fisher does not have intellectual property rights over her cells superior to her flesh and blood.

AMY GOODMAN: We're going to go to Ron in one second, but, Ben Crump, I watched your news conference carefully on Monday. That was 70 years to the day that Henrietta Lacks died, and you made a reference to her suffering at the end of her life. Yes, she was a cervical cancer patient, but you talked about radioactive rods being put inside her — can you explain? — that weren't actually — this procedure wasn't done to help her?

BENJAMIN CRUMP: Absolutely. They were not trying to help her with her cancer. They were experimenting with her, using her as a lab rat, as with the time in the 1950s with Black people. We must remember, this was the era when they did the Tuskegee experiment. They did the Alabama appendectomy, where people like Fannie Lou Hamer, Black women, went to hospitals and were lied to. They said they were treating them, and they actually sterilized them, where they could have no children. And you had Black soldiers during this time, in World War II, being put in gas chambers with faulty gas masks so they could study the effects of the gas chambers on the human body. And when those Black soldiers complained, Amy, they were court-martialed and put in prison.

AMY GOODMAN: And as a result of the medical experimentation on the African American community, like Tuskegee, you have the situation where African Americans today are concerned about the COVID-19 vaccine, asking, "Is there experimentation being done right here?"

But I want to go right now to Ron Lacks, the grandson of Henrietta Lacks and the author of Henrietta Lacks: The Untold Story.

Ron, thanks so much for joining us. Your grandmother has led to so many medical breakthroughs because of her line, her cell line, the HeLa cells. I was just talking to a science student who said he was told it was based on a Helen Lane. And, of course, it's the first two letters of both of her names, Henrietta Lacks. When did you learn how that cell line was being used? And talk about the significance of this lawsuit.

RON LACKS: Through my mother, Bobbette Lacks. She uncovered it when she was having lunch with a neighbor. And she was introduced as Bobbette Lacks. And a professor said, "We're working with someone's cells named Henrietta Lacks." And then my mother told him, "That's my mother-in-law." And that's when we first found out, in 1973.

AMY GOODMAN: So, talk about growing up as the grandson of Henrietta Lacks and what you understood, and how you actually learned about what happened with your grandmother, and what caused you to write your book, Henrietta Lacks: The Untold Story.

RON LACKS: Well, when they started doing interviews with my family, that's when more information about what was going on at the time. So, I was young. I was a teenager. So I didn't understand it too much until later years, when I found out all what her cells has been doing. And my father, I watched him try to get lawyers, with no success. So, he was — my parents was trying to find out what was going on with the cells and who was doing what. And we found out that pharmaceuticals was enriching themselves. So, my father, like I said, unsuccessfully, tried. And coming up, it took a strain on him, because he watched his mother when he was a teenager. The radiation bars that was inserted in her took its toll on his mother, and he watched that. And he's disturbed from that right to this day.

So, when this hit the media, they took a different approach to the family. Where my father was trying to explain what was going on with him trying to get control of Henrietta's legacy, they turned their back on him, even at a meeting with NIH and Johns Hopkins, and my dad was there with his attorney. And they had Rebecca Skloot on the line, mainly listening to what she had to say, instead of my dad and his attorney.

So, I've seen the total disrespect to my father. And I had to get what he experienced from his mother to what we was going through. And the world should know what was done to this family. They tried to divide us. They tried to keep us in the dark about things. And I had to tell the story. It's a very interesting story, what we went through. And I think no family should ever go through this.

AMY GOODMAN: And then, talk about your attempts to bring lawsuits to challenge, reshape the narrative of your grandmother, and then going on your book tour, one place, and making the final connection in this latest lawsuit.

RON LACKS: Well, like I said, they tried for years to get attorneys to take this case up. This is Johns Hopkins' backyard, so we wasn't getting nowhere. Only allies that we had was University of Maryland and Danny Glover, you know, the only ones that would respect the Lacks family. So, when I went to Texas on my first booking sign in, they embraced me, and I talked to the congregation there, and I met a young man, and he introduced me to Ben Crump. And that's when the light got shined on this situation. And I'm so happy. God is good.

AMY GOODMAN: So, can you talk about how your family was defamed, the stories told about your family that were untrue, to discredit you, to try not to seek some kind of reparations for what happened to your grandmother?

RON LACKS: Well, OK, for one thing, Rebecca Skloot has embarrassed Henrietta's children, all four of them. She called my dad, Sonny and Abdul greedy, because they're only in this for the money. But my father and them was in this ever since 1973, just trying to get the rights to his grandmother's legacy. And Henrietta Lacks signed her name with an X —

AMY GOODMAN: Rebecca Skloot, of course, is the author of another book on Henrietta Lacks, that has been a multiyear best-seller, The Immortal Life of Henrietta Lacks. Go ahead, Ron.

RON LACKS: Exactly. And she had in there that my grandmother signed her name with an X. That's why I put in the back of my book, with a poem, my grandmother's John Hancock, right in the back. She had beautiful penmanship. And illiterate — trying to say that my grandmother was illiterate. She wasn't. She was a beautiful, Black, intelligent woman that loved her family and loved her neighbors. So, my grandmother would feed the neighborhood. And now you're asking her not to feed her children? That don't sound right to me. She was a wonderful woman.

AMY GOODMAN: What does it mean, as you move forward, your family standing together at this lawsuit, the grandchildren speaking up for your parents, the children of Henrietta Lacks?

RON LACKS: For a next generation, that's what I'm saying, that the Lacks family needs to take back control of Henrietta's legacy, so we can pass down to the next generation of Lackses, so they won't have to go through this fight that my grandfather and my dad went through. So that's why I had to speak out and tell my story.

AMY GOODMAN: Ron Lacks, I want to thank you for being with us, grandson of Henrietta Lacks, author of Henrietta Lacks: The Untold Story, speaking to us from Baltimore, and Ben Crump, civil rights attorney, speaking to us from Houston.

Coming up, we speak to historian Keisha Blain, author of the new book, Until I Am Free: Fannie Lou Hamer's Enduring Message to America. All that and more, coming up.