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Ron Lacks, 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 her family has fought for decades to take control of his grandmother’s inheritance.
On Monday, the family filed their first federal lawsuit, with civil rights attorney Benjamin Crump, who they said The Daily Beast would hopefully give them the kind of property they have long sought.
“We’re just trying to take back control of the Henrietta legacy,” Ron Lacks told The Daily Beast. “Everyone benefited from Henrietta’s cells, except her family.
In 1951, tissue from Lacks’ cancerous tumor was taken by white doctors at Johns Hopkins Hospital during treatment without his knowledge. When the cells were found to reproduce and live outside her body, doctors turned her 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 authorized tissue removal and for a long time her family never benefited from the findings.
Lack’s story spread after a 2010 bestselling book and 2017 HBO feature film starring Oprah. With renewed focus on Lacks, her family tried to better control the use of her cell line. HeLa and getting paid for the way she was bought and sold for breakthroughs in medicine.
The new lawsuit is against Maryland-based billion-dollar biotech company Thermo Fisher Scientific.
The company, despite widespread knowledge of how Lacks cells were originally stolen, continued to make a “conscious choice to sell and mass produce” Lacks tissue, according to the lawsuit. Despite the huge sums of money in revenue the company makes – over $ 30 billion a year according to their website – the lawsuit says “Ms. Lacks’ estate and her family haven’t seen a dime.
“Blacks have the right to control their bodies,” the lawsuit says. “And yet Thermo Fisher Scientific treats the living cells of Henrietta Lacks as goods to buy and sell.”
“It’s not just about social justice, it’s about genetic justice.“
Thermo Fisher Scientific did not respond to a request for comment.
Although this is the first lawsuit filed by the Lacks estate, it is not their first rodeo to try and take control of the 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 voice over how it is used. In 2018, the family tried to apply for cell guardianship, but it was unsuccessful. “We have met a lot of lawyers over the years without success,” Lacks told The Daily Beast.
Although Lacks said he felt confident with Crump’s portrayal, medical policy and legal experts who spoke to the Daily Beast said the family could face a difficult challenge thanks to the scarcity of the jurisprudence.
Shobita Parthasarathy, professor of public policy at the University of Michigan, told the Daily Beast that the legal challenge would be “difficult” for the Lacks family because they were not directly injured and failed to establish the property of cells.
She also referred to a similar case in 1990, where the California Supreme Court ruled that 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, has not have the right to share in the profits made as a result of research that used his body samples.
Despite this, Parthasarathy said the cultural moment the country finds itself in, in which issues of systemic racism and injustice come to the fore, along with concerns about privacy and data, could help the succession of Lacks.
“We are right now where we are paying attention to these breed issues. We pay attention to equity issues, ”she said. “We’re starting to wonder about the status of our data in all kinds of places.”
Crump, for his part, told the Daily Beast that he hoped Lacks’ trial would lead to an “unprecedented” outcome that would affect future cases. “We think it’s going to be a benchmark,” he said. “It’s not just about social justice, it’s about genetic justice.”
Nicole Woitowich, professor of medical social sciences at Northwestern University, said she supports the new effort.
She said the biomedical field has been talking about moving away from using Lacks cell lines for research for years, but it’s still happening.
“These cells are still widely used today,” she told the Daily Beast, adding that the cell lines were very easy to obtain. (According to the Thermo Fisher Scientific website, HeLa cell lines can be purchased for $ 2,000 online.)
Woitowich said the Lacks cell line was revolutionary because it had previously been very difficult for scientists to keep human cells alive long enough to test them and serve as a model for studies. But the long-lasting and regenerative “miraculous” properties of Lacks cells have made it possible to continue cultivating and sharing them around the world as a basis for studying human cells outside the body and testing new treatments, viruses, and others. studies.
The NIH said in 2013 that Lacks cells had helped make some of the most important medical advancements possible, including the development of vaccines, cancer treatments, and in vitro fertilization techniques.
But Woitowich said that doesn’t mean the domain should continue to use cells ethically.
She said the widespread understanding of how they were obtained and the availability of less morally dangerous alternative cell lines that scientists can use are good reasons for the field to move away from the Lacks cell line. .
“From a bioethical point of view, it is 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’ history has become mainstream in recent years, the University has pushed back its guilt.
On a website dedicated to Lacks, the University said there was “no established practice” for obtaining consent from patients when taking cell or tissue samples for research in 1951. They have said there were also no regulations on how to use patients’ cells in research.
“It was standard practice at Hopkins to take additional samples from cervical cancer patients for biopsies to be used for research purposes, regardless of race or socioeconomic status. “the university wrote. The university also wrote that it had “never sold or profited” from the discovery and sale of Lacks cells. They said they didn’t own the cells.
Although Thermo Fisher Scientific is the first company to be sued by Lacks’ Estate, Crump told The Daily Beast that there will likely be future lawsuits against other companies that use the ubiquitous cell line.
“Just as she was the cornerstone of much of modern medicine,” he told The Daily Beast, “I think her case will be the cornerstone of jurisprudence in this growing area called justice. genetic.”
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