Henrietta Lacks’ stolen cells changed medicine forever. Can her family’s lawsuit deliver justice?

Published 8/24/2022 5:24 p.m. EDT

Illustration of Henrietta Lacks and members of her family.

Little pieces of Henrietta Lacks are all around us.

Cells of the wife, mother and one-time tobacco farmer who raised her family in Turner Station have been used to develop the polio and COVID-19 vaccines. Research on Lacks’ cells underpin the world’s most common and effective fertility treatment. Her cells were even loaded onto a rocket ship so scientists could assess the impact of space travel on living tissue.

But none of that groundbreaking research and development was done with consent from Lacks, a Black woman who was treated for cervical cancer 70 years ago in a segregated Johns Hopkins Hospital ward.

And now her descendants are seeking justice.

They want compensation from Thermo Fisher Scientific, a multibillion-dollar biotechnology company that uses Lacks’ cells — HeLa cells — to develop lucrative laboratory products, and they’ve filed a federal lawsuit to compel the company to pay up. A key ruling from the judge overseeing the case is expected any day now.

If they win, the Lacks family will get more than cash. A victory would be a historic denunciation of the racism that decades ago led white, male Hopkins doctors to take tissue samples from an anesthetized Black cancer patient without her knowledge and to distribute her cells to other scientists when they realized they could replicate outside her body, a medical miracle.

Lawsuits alleging profits have been made from stolen, regenerative biological material aren’t common, so the road map to legal success is far from certain. But if the strategy works, this could become the first in a series of complaints seeking compensation for and control of Lacks’ cells.

Ron Lacks, the grandson of Henrietta Lacks speaks during a panel discussion on August 1, 2022 in Washington, D.C. Lacks speaks on how Henrietta Lacks cells were used for to develop the polio and Covid-19 vaccines.

“If we can get justice for Henrietta Lacks, maybe we can start to tear down the layers of medical racism that exist even to this day,” said Ben Crump, one of the family’s lawyers, who is known nationally for representing Black victims of police violence. “This case is far more important than any police brutality case because it speaks to the very humanity of our people.”

Thermo Fisher Scientific officials have said Lacks’ descendants waited too long to take legal action and argued that the company shouldn’t be singled out for using HeLa cells in research and product development without the family’s consent, because, it says, countless other companies around the world do the same thing.

Three months ago, nearly two dozen of Lacks’ descendants appeared at the Edward A. Garmatz federal courthouse in downtown Baltimore for the first hearing since they filed the lawsuit last fall on the anniversary of Henrietta’s death. They each wore a red carnation boutonniere to match her favorite red nail polish.

The youngest was 6, around the age of some of Lacks’ children when she died. The oldest was her son Lawrence Lacks, 87, who has Alzheimer’s disease and is fighting for relief for his mother, and against time. Lawrence’s son, Ron Lacks, the personal representative of Henrietta’s estate, said attending their first court hearing was satisfying and surreal.

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“My mom and dad tried for years to get justice through an unjust system, but the doors to justice were never open to them,” said Ron Lacks, 63. “I hope things will be different for this family’s next generation. The time for justice is now.”

Lawrence Lacks at age 16.
Henrietta Lacks, a 31-year-old mother of five, died of cervical cancer on 4 October 1951.

‘Black people were an afterthought’

In 1951, when Henrietta Lacks sought treatment for the knot she felt near the neck of her womb, she went to Johns Hopkins Hospital because it was the only major medical institution for miles that treated Black patients. She was living at the time near the Sparrows Point steel mill southeast of Baltimore where her husband and several cousins worked.

The hospital was a state-of-the-art facility with curved walls to deter dust and large windows that let in lots of germ-killing natural light.

But though the East Baltimore hospital’s benefactor and namesake famously required the institution to treat everyone, regardless of sex, age or race, free of charge, all patients were not treated equally, said Ezelle Sanford, an assistant professor of history at Carnegie Mellon University and a visiting assistant professor at Hopkins who studies segregation in American hospitals.

Black patients weren’t allowed to be treated in the same rooms as white people, and the hospital never built a separate ward for them. So, before the hospital integrated, they were treated in overflow space attached to the main wards or sometimes housed in the dining room, Sanford said.

“Black people were an afterthought,” he added. “Segregation organized the institution from the very beginning.”

By the mid-20th century, the discrimination evident in the hospital’s physical design had seeped into many aspects of care, including its blood bank. A white medical student who worked at the hospital around this time described in a 2011 blog post how he was required to keep blood donated by Black people separate from blood donated by white people, a practice that had no scientific basis.

Hopkins doctors of this era also routinely used Black patients like Lacks in medical research without their knowledge or consent — a practice many scientists at the time believed was fair because the patients were getting care for free.

“Black people were an afterthought. Segregation organized the institution from the very beginning.”

—  Ezelle Sanford, an assistant professor of history at Carnegie Mellon University and a visiting assistant professor at Hopkins

Treatment notes described in a book about Lacks, as well as court records, detail her time as a patient.

When she first sought care, she consented to a biopsy of the nickel-sized mass a Hopkins gynecologist found on her cervix. Testing of that tissue sample led to her diagnosis with epidermoid carcinoma of the cervix, stage 1, an abnormal growth from the surface of her cervix into deeper tissue.

She did not, however, permit a doctor to take two additional tissue samples while she was under anesthesia just before receiving her first cancer treatment.

Cells from those undisclosed, medically unnecessary biopsies are the ones Hopkins scientists later grew into the world’s first immortal cell line.

Attorneys for the Lacks family describe the procedure as battery, a legal term that’s normally applied to physical attacks, and they say the HeLa cells now owned by Thermo Fisher Scientific are stolen goods.

Henrietta Lacks, a 31-year-old mother of five, died of cervical cancer on 4 October 1951
Henrietta Lacks and her husband David Lacks.

Hopkins never profited from the cells and isn’t named in the complaint as a defendant.

But had Hopkins doctors not taken Lacks’ tissue more than 70 years ago and shared it with other researchers, there would be no lawsuit. Hopkins spokesperson Liz Vandendriessche said what happened to Lacks “represents a painful chapter in U.S. medicine and is something that would not happen today.”

“While we cannot change the past, we at Johns Hopkins have made sure we never sold or profited from the discovery or distribution of the HeLa cells,” Vandendriessche said. “In addition, we at Johns Hopkins have been supportive of changes since 1951 that ensure patients provide full informed consent before being part of any research.”

Lacks’ first cancer treatment successfully shrank her tumor. But afterward, she learned that the toxic radium rods doctors had placed on her cervix to kill her cancer cells would also make her infertile. “Told she could not have any more children,” her doctor wrote in her chart. “Says if she had been told so before, she would not have gone through with treatment.”

Failing to warn Lacks about the side effects of the procedure was a violation of Hopkins’ policy at the time, which required doctors to disclose that information to patients. It was another example of the medical racism she endured there.

Soon after starting radiation therapy, the next step in her cancer treatment plan, Lacks’ health declined.

Doctors initially ignored her complaints about worsening abdominal pain before finally examining her and finding a stony mass. An X-ray showed that the new tumor was attached to her pelvic wall and was inoperable. Within days, additional tumors would grow that caused Lacks near constant pain for the final days of her life.

Around the same time, the Hopkins doctor who first discovered that Lacks’ cells could survive outside her body and rapidly multiply appeared on Baltimore’s Channel 13 to tout his work, clutching a glass bottle believed to be filled with her miraculous cells.

He never mentioned or credited her. Lacks died a few months later. She was 31.

A general view of "The Immortal Life Of Henrietta Lacks" Viewing & Panel Discussion with Renee Elise Goldsberry, Dr. Jessica Shepherd, Dr. Jackie Walters, And Tanika Gray Valbrun By The White Dress Project at World of Coca Cola.

Building the legal case for compensation

The origin of He-La cells gained notoriety in 2010 when author Rebecca Skloot published “The Immortal Life of Henrietta Lacks,” and the book became a bestseller.

Oprah Winfrey turned the book into an HBO movie in 2017, starring as Lacks’ daughter, Deborah Lacks.

But the attention divided the family. Some helped Skloot with her research and embraced the spotlight afterwards. Others, like Ron, were bothered by the way she portrayed the family as poor and uneducated.

Skloot did not respond to a request for comment.

Ron decided to write his own book, a self-published memoir, “Henrietta Lacks: The Untold Story,” in 2020.

Ron Lacks, the grandson of Henrietta Lacks speaks during a panel discussion on August 1, 2022 in Washington, D.C. Lacks speaks on how Henrietta Lacks cells were used for to develop the polio and Covid-19 vaccines.

While hosting a book-signing event thousands of miles away from Baltimore in a small town outside Galveston, Texas, an enthusiastic attendee offered to connect Ron with Ben Crump. Ron knew of Crump as a high-profile lawyer who had represented victims of police violence, but didn’t think much would come of the idea.

Their relationship nearly ended before it began. When Crump called Ron, he hung up on the lawyer, not believing it was him.

“I told my wife, ‘This ain’t Ben,’ and it took her saying, ‘No, Ronny that sounded like Ben!’ to realize what I’d done.”

Wondering why the call had dropped, Crump dialed again.

“I was so humble when he called back. I probably made up an excuse like, so sorry, I dropped my phone in the water,” he added.

They met for the first time last summer at an Inner Harbor hotel with underwhelming crab soup. At the time, Ron was still not on speaking terms with some of his relatives, but when he posted about the meeting on Facebook, he said, his phone “started ringing off the hook” with calls from relatives who wanted to get involved.

Ron Lacks, the grandson of Henrietta Lacks speaks during a panel discussion on August 1, 2022 in Washington, D.C. Lacks speaks on how Henrietta Lacks cells were used for to develop the polio and Covid-19 vaccines.

“That’s when the divide stopped,” he added.

The attorney’s prominence and track record signaled to everyone that the family likely had a strong case.

Crump said he got involved because he’s appalled that a company is profiting from Hopkins’ misconduct and believes a victory will deter that sort of behavior going forward.

“Johns Hopkins butchered Henrietta Lacks and stole her cells. And when she died in agonizing pain, they didn’t lose sleep over that, but we do,” Crump said. Indeed, the Hopkins scientist who first took Lacks’ tissue without her consent actually sought additional samples after she died. “That’s why we declared we will fight racism and bigotry on every front, wherever it rears its ugly head.”

Years after Lacks’ death, it was the backlash against a New York doctor and cancer researcher who routinely injected Lacks’ cells into unsuspecting patients that led the National Institutes of Health to implement the nation’s first official informed-consent guidelines in 1966.

“Johns Hopkins butchered Henrietta Lacks and stole her cells. And when she died in agonizing pain, they didn’t lose sleep over that, but we do.”

—  Ben Crump, one of the family’s lawyers

Crump knew he would need help taking on a company like Thermo Fisher Scientific, so he called Chris Seeger, a New Jersey-based attorney who has led some of the most significant class action lawsuits in U.S. history, including the landmark concussion case filed against the National Football League by retired players and their families. The two men had never worked together, but they knew of one another because Seeger was a close friend of Crump’s mentor.

“He didn’t have to do a hard-sell job,” Seeger said. “I knew I wanted to get involved.”

Together, they decided to bring an unjust-enrichment claim, a legal strategy proposed a decade ago by Southern University Law Center professor Deleso Alford, who specializes in teaching ethics to law and medical students. She got the idea after attending a conference on legal remedies.

To prove their case, Alford argued in a 2012 health law journal article that Lacks’ descendants would need to show she had conferred a benefit to a defendant, that the defendant was aware of the benefit and that the defendant had inequitably retained the benefit even after learning it was tainted. Alford believed the Lacks family had enough evidence to satisfy all three requirements.

Still, she never imagined that trial lawyers would read the journal article years later and file a federal lawsuit built around her ideas.

She said she’s excited justice is within reach for the Lacks family and nervous about how the case will unfold. Typical unjust-enrichment claims involve a single action, whereas this case involves a theft of biological material capable of regenerating in perpetuity.

“The Lacks family is enduring a continuing wrong, not a past wrong,” Alford said. “Henrietta’s cells are immortal, so the harm is happening right now.”

General atmosphere at HBO's The HeLa Project Exhibit For "The Immortal Life of Henrietta Lacks."

‘This is a little bit uncharted’

U.S. District Judge Deborah Boardman presided over the May hearing at which a Thermo Fisher Scientific lawyer argued the Lacks family’s case should be dismissed. The Biden appointee and former federal public defender began by reading an opening statement from the bench that summarized key passages from the complaint, an unusual move.

She described how common it was around the time Lacks sought treatment for medical institutions to abuse Black patients’ trust in the name of research and training. This was the era when Black men were denied treatment for syphilis so doctors could study the disease and Black women who consented to appendectomies had their reproductive organs removed instead.

Lacks, she emphasized, was not the only one.

“The Lacks family is enduring a continuing wrong, not a past wrong. Henrietta’s cells are immortal, so the harm is happening right now.”

—  Deleso Alford, Southern University Law Center professor

Early in the two-hour hearing, Boardman, a Maryland native, praised attorneys Seeger and Crump for effectively arguing that their clients deserve relief.

“Mrs. Lacks and her family and her children and grandchildren will never get any recovery here,” she said. “Her cell line, her body, will continually be replicated, and it’s in the possession of your client and other companies who make billions of dollars from this.

“Why isn’t that unjust?” she asked Andrew George, the attorney representing Thermo Fisher Scientific.

He responded by stressing that his company shouldn’t be singled out. He also questioned whether what happened to Lacks and her descendants counts as injustice at all. Were the company forced to defend itself at trial, he would have to go back and assess whether Lacks’ medical care and the taking and use of her cells was “actually unjust.”

George’s main legal argument against the lawsuit is the family waited too long to bring it. He said their claim should have been filed within three years of the publication of Skloot’s book because the book put the family “on notice” about the biotechnology sector’s routine use of HeLa cells.

Ron Lacks, the grandson of Henrietta Lacks speaks during a panel discussion on August 1, 2022 in Washington, D.C. Lacks speaks on how Henrietta Lacks cells were used for to develop the polio and Covid-19 vaccines.

Seeger and Crump urged Boardman to reject that logic.

Yes, the Lacks family has been contemplating litigation for years. But they only learned about the company’s use of the cells recently, the attorneys said, calling George’s insistence otherwise “disingenuous.” And even if the claim clock did start ticking more than a decade ago, it shouldn’t matter. Seeger said he thinks the Lacks family should be able to file a new unjust enrichment claim every time Thermo Fisher Scientific grows HeLa cells in a laboratory.

George protested, calling the idea of limitless liability unfair to companies like the one he represents.

But isn’t the benefit limitless, Boardman asked?

George wasn’t sure how to answer.

“This is a little bit uncharted,” he said later in the hearing.

Boardman quipped, “All of this is.”

George also argued that the case should be dismissed because new claims should not accrue every time a HeLa cell replicates and because two pieces of required, technical information are missing from the complaint. Seeger and Crump disagree.

Wearing a red tie to match the Lacks family’s red carnation boutonnieres, Crump defended their right to sue. He told Boardman the unjust-enrichment law was designed to help plaintiffs just like them, and that their Blackness compounded their disadvantage. Had Henrietta Lacks been white, he argued, her descendants would not need to go to court and beg to regain control over her genetic material. They would never have lost it in the first place.

“He can come up with all kinds of intellectual ways to justify discrimination, but we can also come up with intellectual ways to address discrimination,” Crump said, speaking about George. “Denying this motion does not only put us on the right side of the law, we believe, but also on the right side of history. And importantly, Your Honor, on the right side of humanity.”

The family has not requested a specific amount in monetary damages and won’t until they learn more about how much Thermo Fisher Scientific has made with Lacks’ tissue. But they have asked for a jury trial and for Boardman to create a trust that would restore their ownership of the cells.

Instead of ruling immediately on the company’s motion to dismiss, Boardman said she would issue a decision at her discretion.

So for now, the Lacks family must wait.

One sweet night

Earlier this month, Henrietta Lacks’ descendants gathered with friends and supporters at a private social club in Washington, D.C., to commemorate her 102nd birthday. Smiling guests posed in a 360-degree photo booth and enjoyed birthday cake decorated with red piping and sprinkles. Ron Lacks, Crump and Alford were all there to celebrate and speak to attendees about the case.

“If any of you have gotten a vaccination in the last 50 years, you have a little bit of Henrietta Lacks in you,” Crump told the crowd.

The party was a joyous counterweight to the indignities the Lacks family says they have suffered over the years.

Not only were Henrietta’s cells taken without her consent, robbing her family of the comfort that a deceased loved one’s body was treated with respect, but later, her story was marketed by people unconcerned with the family’s interests.

Ron Lacks, the grandson of Henrietta Lacks speaks during a panel discussion on August 1, 2022 in Washington, D.C. Lacks speaks on how Henrietta Lacks cells were used for to develop the polio and Covid-19 vaccines.

Sitting onstage, wearing a purple plaid blazer and rhinestone-studded loafers, Ron addressed the partygoers and recounted his motivation for writing his memoir, the act that led him to Crump — and set the family’s lawsuit against Thermo Fisher Scientific in motion. It was hearing Gayle King, a friend of Winfrey’s, describe his aunt Deborah as “a little crazy” in a television segment promoting the Henrietta Lacks movie.

The film portrays Rebecca Skloot and Deborah as partners who worked together to uncover the truth about HeLa cells. But even though Skloot set up a charitable foundation that has made grants to members of the Lacks family, Deborah’s son, Alfred Lacks, says the author denied his mother a percentage of the book royalties and didn’t call when she died shortly before the book was released. Skloot did not respond to a request for comment.

“If any of you have gotten a vaccination in the last 50 years, you have a little bit of Henrietta Lacks in you.”

—  Ben Crump, one of the family’s lawyers

At The Gathering Spot in downtown D.C., the Lacks family tried to set their pain and disappointment aside.

Ron signed copies of his book and posed for photos in front of a step-and-repeat backdrop. Attendees sipped wine and noshed on passed appetizers while a deejay played R&B.

They talked about Henrietta not as a collection of cells, but as a vibrant young woman who loved cookouts and dancing, who always put family first and who cherished the time she spent on weekends in her sleepy, rural Virginia hometown of Clover, population 536.

They talked about her devotion to her husband, who shuttled her to many of her Hopkins appointments before clocking in at the steel mill, and her love for her five children, two of whom were under the age of 2 when she died.

For one sweet night, she was alive.