The family of Henrietta Lacks — whose immortal cells were stolen by a white doctor at Johns Hopkins Hospital in 1951 — is the closest they’ve ever gotten to getting justice for their loved one.
Pharmaceutical companies have made hefty profits from the unethical harvest. However, neither the late Henrietta nor her family have seen a dime of the earnings that were literally extracted from her body and sold in various products.
But that could all change if the courts decide to move forward with a lawsuit against ThermoFisher Scientific, the “world leader in serving science, with annual revenue of approximately $40 billion.”
“We are finally at this moment where we think we are going to get justice for Henrietta,” attorney Ben Crump, who’s representing the Lacks family in the case, told Word In Black in a video interview.
The family announced the civil lawsuit last year after Henrietta’s eldest grandson, Ron Lacks, wrote and published “Henrietta Lacks: The Untold Story.” The book caught the attention of attorneys Crump and Chris Seeger.
Arguing the biotechnology company has made millions in “unjust enrichment,” the Lacks took the case before a federal judge in Baltimore on May 17, 2022, and are now awaiting a ruling.
Ron, 63, said walking through the courtroom doors for the first time as a family was an emotional experience — and a long-awaited one.
“I broke down, and I cried because my ancestors was waiting for this. And here I am, stepping forward in the courtroom,” he says.
Ron grew up in Baltimore watching his parents struggle to get “justice in an unjust system” for his paternal grandmother.
His mother, Barbara Lacks, found out about the stolen cells while eating lunch with a friend in 1973. A professor happened to be there who told her he was working with cells named “Henrietta Lacks.”
“My mom told him, ‘that’s my mother-in-law.’…And he started to tell her what they was doing with the cells. And that’s how we came to know about ‘HeLa’ cells,’” Ron recalls.
After the discovery, his parents tried everything they could to right the wrong for the family, but “the doors were never open” for them, he says.
So, when he became an adult, he took up the mantle and got involved. He watched as people outside the family started telling the family’s narrative; writing books and producing movies.
In 2010, science writer named Rebecca Skloot wrote “The Immortal Life of Henrietta Lacks,” which was later adapted into an HBO film. Ron says the film wrongfully portrayed his aunt Debra as schizophrenic.
“You can’t find one family member that would have said that. So I just didn’t understand. And I said, no, this stops here, and it stops now. I have to speak out,” Ron says about writing his book.
In order to tell the story, Ron had to interview his father, who he says was deeply affected by what happened to Henrietta and struggled to talk about it.
“For a long time, he couldn’t talk about his mom because of the trauma that he went through…I mean, ‘cause my dad, he watched his mother die,” he recalls.
Ron’s father recalls watching his mother’s health decline before her death, just to find out she’d been abused by Johns Hopkins, as many Black people in that day and age were skeptical of.
“Here in Baltimore, Black people was scared to walk past Johns Hopkins Hospital because of the experiments on Black folks. I mean, that was a known rumor in Baltimore. So my grandfather and my dad knew this story, so taking Henrietta to Johns Hopkins was a risk in itself. And come to find out they were justified decades later,” Ron says.
“They inserted radiation bars in Henrietta, and my dad used to watch her come home every night and watch her get weaker and weaker,” Ron continued. “So he seen her being ate up from the inside out. She was the shell of herself. So he watched this, and he was traumatized by that.”
But after becoming frustrated by the narrative in Skloot’s projects, depicting Henrietta as a poor, Black farmer who signed her name with an ‘X,’” he managed to share the good memories he had of his mother with the world.
He remembers her as a mom that read to her children stories and picnicked with them.
Now, over 70 years since Henrietta was violated as a cancer patient, the family awaits a response from the justice system.
Since they were stolen, her cells have played a critical role in some of the world’s most advanced medical discoveries — including the study of AIDS and leukemia, the effect of zero gravity in space, and the development of the polio and COVID-19 vaccines.
Because she is still “multiplying” each time her cells are used in a product, Ron said he doesn’t “think her soul is at rest.”
During a press conference after the recent hearing, Crump said they told the court, “The HeLa cells are not derived from Henrietta Lacks but they are Henrietta Lacks — and you cannot disassociate the HeLa cells from Henrietta Lacks because she was real. She was a human being.”
And because Henrietta and her living cells are not separate, it’s not too late for the family to get justice.
“Each time that there is a regeneration and selling for profit and commercialization of these cells, the statute of limitations starts all over again,” Crump said during the conference.
As the family walked out of the court, the judge said she needed more time before deciding whether to move the case forward or not. But regardless of what comes next, Seeger says he and Crump will be with the family the whole way.
“We’re going to try to help them get the narrative back from people who stole the cells from Henrietta Lacks and stole the narrative. They should be allowed to tell their own family’s story,” Seeger told us in a phone interview.
If the courts rule in favor of the Lacks family, there could be major ripple effects, Seeger says. Not only will other pharmaceutical companies be up next for lawsuits, but this would also be a big win for all Black people, who’ve suffered in the U.S. for centuries without being given the justice that’s due.
“I think this is a massive case, which could set very helpful precedent,” Seeger says. “I mean, there’s a lot of wealth that was built in this country on slave labor. And there have never been reparations.”