‘Black suffering’: Henrietta Lacks medical research lawsuit settled in US

Cells taken in 1951 from Lacks, a Black woman, without her knowledge became the cornerstone of modern medical research.

The family of Henrietta Lacks has settled a lawsuit in the United States against a biotechnology company accused of reaping millions of dollars in profit from the use of her cells.

They were the first human cells to continuously grow and reproduce in lab dishes, making them pivotal for modern medical research. Their longevity allowed for the creation of vaccines for polio and later COVID-19, as well as experiments in genetic mapping.

But the cells were collected from Lacks, a Black woman, without her knowledge as she sought treatment for cervical cancer in 1951 at Johns Hopkins Hospital in Baltimore, Maryland. She would die later that year.

The non-consensual harvesting of the cells was not illegal at the time. But in a lawsuit filed in 2021, Lacks’s family argued that the biotech company Thermo Fisher Scientific Inc has continued to profit from her cells in the decades since, including through their sale.

The family did not receive any money from those business ventures. The lawsuit was brought by her grandchildren and other descendants.

“Black suffering has fueled innumerable medical progress and profit, without just compensation or recognition,” the lawsuit said. “Too often, the history of medical experimentation in the United States has been the history of medical racism.”

Happy birthday Henrietta Lacks! Henrietta died of cancer in 1951, but cells taken from her are still being used today for medical research! Her breakthrough contributions to modern medicine have changed and saved many lives. Today, we thank her for her gift! pic.twitter.com/9GFy7y3IQO

— Ben Crump (@AttorneyCrump) August 1, 2023

In a joint statement on Monday, Thermo Fisher representatives and lawyers for the Lacks family said, “The parties are pleased that they were able to find a way to resolve this matter outside of Court and will have no further comment about the settlement.”

The terms of the settlement remain confidential. But in a news conference, Lacks’s grandson Alfred Lacks Carter Jr celebrated the outcome.

“It was a long fight — over 70 years,” he said. “And Henrietta Lacks gets her day.”

Lacks’s cells have become known by the nickname “HeLa”, a mash-up of the opening two letters of her first and last names.

While most human cells die shortly after being removed from the body, the HeLa cells have survived and thrived in laboratories.

They became known as the first immortalised human cell line because scientists could cultivate Lacks’s cells indefinitely. That meant scientists anywhere could reproduce studies using identical cells.

But Lacks’s family was not informed of her role in medical history until 1970s. And even then, her contributions were not widely recognised until Rebecca Skloot published her research in the 2010 bestselling book, The Immortal Life of Henrietta Lacks.

A poor tobacco farmer from southern Virginia, Lacks had lived with her husband in Turner Station, a historically Black community outside Baltimore. They were raising five children when doctors discovered a tumour in Lacks’s cervix.

Johns Hopkins Hospital placed her in a segregated “coloured ward”, where she ultimately died. She was buried in an unmarked grave.

In a statement posted to their website, Johns Hopkins Medicine officials said they reviewed all interactions with Lacks and her family after the publication of Skloot’s book.

They acknowledged their ethical responsibility but noted the hospital “has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line”.

Lacks’s relatives had previously reached a 2013 agreement with the National Institutes of Health (NIH), a government agency, that gave them a degree of control over how the DNA code from HeLa cells are used.

The deal came after the family raised privacy concerns about making Lacks’s genetic makeup public.

The World Health Organization (WHO) honoured Lacks in 2021, saying it wanted to address a “historic wrong”. The event included a dialogue with the Lacks family, who were invited to WHO offices in Geneva, Switzerland.

“WHO acknowledges the importance of reckoning with past scientific injustices and advancing racial equity in health and science,” Director-General Tedros Adhanom Ghebreyesus said.

“It’s also an opportunity to recognise women — particularly women of colour — who have made incredible but often unseen contributions to medical science.”