Ron Lacks, the grandson of Henrietta Lacks—a 31-year-old Black woman in the 1950s whose stolen body tissue later became a cornerstone of modern medicine—said his family has been fighting for decades to get control of his grandmother’s legacy.
On Monday, the family filed their first federal lawsuit, along with civil-rights attorney Benjamin Crump, which they told The Daily Beast will hopefully give them the sort of ownership they’ve long been looking for.
“We’re just trying to take back control of Henrietta’s legacy,” Ron Lacks told The Daily Beast. “Everyone has been benefiting from Henrietta’s cells except for her family.”
In 1951 tissue from Lacks’ cancerous tumor was taken by white doctors at John Hopkins Hospital during treatment without her knowledge. When the cells turned out to be reproducing and living outside of her body, doctors turned it into a miracle cell line that has been used around the world to test new treatments and viruses. But Lacks, who died less than a year after her treatment, never gave permission for the tissue to be taken and for a long time her family has never profited from the discoveries.
Lack’s story became widespread after a 2010 bestselling book and an HBO feature starring Oprah in 2017. With renewed attention on Lacks, her family has tried to gain more control over the use of her HeLa cell line and get paid for the way it’s been bought and sold for breakthroughs in medicine.
The new lawsuit is against Maryland-based billion-dollar biotech company Thermo Fisher Scientific.
The company, despite the widespread knowledge of how Lacks’ cells were originally stolen, has continued to make a “conscious choice to sell and mass produce” the tissue of Lacks, the suit alleges. Despite the vast sums of money in revenue pulled in by the company—more than $30 billion a year according to their website—the suit says “Ms. Lacks’ Estate and family haven’t seen a dime.”
“Black people have the right to control their bodies,” the suit says. “And yet Thermo Fisher Scientific treats Henrietta Lacks’ living cells as chattel to be bought and sold.”
“This is not just about social justice, but this is about genetic justice.”
Thermo Fisher Scientific did not respond to a request for comment.
Although this is the first lawsuit Lacks’ estate has filed, it is not their first rodeo at trying to get control over Lacks’ legacy.
In 2013 they signed an agreement with the National Institutes of Health (NIH) to give the family more control over scientists’ access to Lack’s genetic material and more say in how it is used. In 2018, the family attempted to apply for guardianship of the cells, but that failed. “We’ve been through numerous lawyers throughout the years with no success,” Lacks told The Daily Beast.
Although Lacks said he feels confident with the representation of Crump, medical policy and law experts who spoke to The Daily Beast said the family could face an uphill challenge thanks to scant case law.
Shobita Parthasarathy, a professor of public policy at the University of Michigan, told The Daily Beast the legal challenge would be “difficult” for Lacks’ family because they were not directly harmed and have been unsuccessful in establishing ownership over the cells.
She also pointed to a similar case in 1990, where the California Supreme Court ruled a man whose blood and tissue samples were taken at a UCLA hospital, and used to create cell lines that were sold and contributed to research, did not have rights to share in profits made as a result of research that used his body samples.
Despite this, Parthasarathy said the cultural moment the country is in, in which questions about systemic racism and injustice are front and center—as well as concerns about privacy and data—could help Lacks’ estate.
“We are at this moment where we are paying attention to these questions about race. We are paying attention to questions about equity,” she said. “We’re starting to ask questions about the status of our data in all sorts of places.”
Crump, for his part, told The Daily Beast that he hopes Lacks’ lawsuit results in an “unprecedented” outcome that will affect future cases moving forward. “We believe that this is going to be a landmark,” he said. “This is not just about social justice, but this is about genetic justice.”
Nicole Woitowich, professor of medical social sciences at Northwestern University, said she was in support of the new effort.
She said the biomedical field has talked about moving away from using Lacks’ cell lines for research for years now, but that has happened yet.
“These cells are still widely used today,” she told The Daily Beast, adding that the cell lines were very easy to obtain. (According to Thermo Fisher Scientific’s website, HeLa cell lines can be bought for $2,000 online.)
Woitowich said that Lacks’ cell-line was revolutionary because it had been very difficult previously for scientists to keep human cells alive long enough to test them and for them to serve as a model for studies. But the “miraculous” long-lasting and regenerative properties of Lacks’ cells made it possible to keep growing them and sharing them across the world as a basis to study human cells outside of the body and test out new treatments, viruses and studies.
The NIH said in 2013 that Lacks’ cells have helped make some of the most important medical advances possible, including the development of vaccines, cancer treatments and in vitro fertilization techniques.
But Woitowich said this doesn’t mean the field should ethically go on using the cells.
She said the widespread understanding of how they were obtained, and the availability of less morally perilous alternative cell lines that are available for scientists to use, are good reasons for the field to move away from using Lacks’ cell line.
“From a bioethical perspective, it’s the right thing to move away from using this cell line. Knowing what we know today,” she said, “it’s just past time.”
Despite the pressure put on John Hopkins by Lacks’ Estate and others after Lacks’ story became more widespread in recent years, the University has pushed back on its culpability.
On a website dedicated to Lacks, the University said there were “no established practices” for getting consent from patients when taking cell or tissue samples for research in 1951. They said there also weren’t any regulations for how to use patient cells in new research.
“It was common practice at Hopkins for extra samples to be collected from cervical cancer patients during biopsies to be used for research purposes, regardless of race or socio-economic status,” the University wrote. The University also wrote that they have “never sold or profited” from the discovery and selling of Lacks’ cells. They said they do not own the cells.
Although Thermo Fisher Scientific is the first company to be sued by Lacks’ Estate, Crump told The Daily Beast there will likely be future lawsuits against other companies that use the ubiquitous cell line.
“Just like she was the cornerstone of much of modern medicine,” he told The Daily Beast, “I believe that her case will be the cornerstone in jurisprudence in this growing field called genetics justice.”