Righting wrongs: genetic justice for Henrietta Lacks  

Henrietta Lacks

For what would have been Henrietta Lacks’ 103rd birthday last month, her family, who settled a lawsuit with Thermo Fisher – a multinational biotech company that had used her cells without seeking consent for several years – regarded the win as a “fitting day” for justice.

While the settlement took place behind closed doors, where Henrietta Lacks’ family spent a day at the federal courthouse in Baltimore in the U.S. negotiating terms with the biotech giant – a case that Thermo Fisher was unsuccessful at having dismissed – it raises the discourse around the ethics of consent in medicine. 

Henrietta Lacks’ family had put forth claims of unjust enrichment against Thermo Fisher. This occurs when one party has received benefits at the expense of another party, and as a result, the latter is owed restitution for it.

And, in the case of Henrietta Lacks’ cell lines raking in money for Thermo Fisher – among several others that used her tissues for medical gains – there is a wider conversation on how her cells were retrieved in the first place, and how racial disparity played into the injustice.

What is the history of Henrietta Lacks’ immortal cells?

Henrietta Lacks was a poor Black tobacco farmer and a mother of five living outside of Baltimore, who was diagnosed with an aggressive form of cervical cancer at the time that her cells were taken during a biopsy. When she succumbed to the disease in 1951, she had been admitted to the ‘colored ward’ of Johns Hopkins Hospital in Baltimore, a ward that was opened in 1894 to segregate Black and white patients. Like with the wards, dining halls, bathrooms and water fountains at the hospital were separate too, as this was the time when the Jim Crow laws that enforced racial segregation in southern United States had been put in place.

When she died, Lacks was buried in an unmarked grave. But little did she know that her cells would survive, and in fact, thrive in labs where they would be used in research, for years to come. Despite the National Research Act of 1974 being drawn up in the U.S. to protect subjects of scientific research, doctors and biotech companies failed to ask her family for consent while continuing to profit off her cells. Her name was also paraded around when her medical records were given to the press, and her genome was published online, which was then taken off soon after it had garnered backlash. 

In 2013, the Lacks family came to an agreement with the National Institutes of Health (NIH) – the central agency in the U.S. that overlooks public health research – to publicly share the genomic data of the cells, popularly known now as the HeLa cell lines.

When the family filed the lawsuit against Thermo Fisher two years ago, in the aftermath of the Black Lives Matter protests, they argued that although Henrietta Lacks’ cells were collected at a time when laws on informed consent did not exist, the biotech company continued to get lucrative even after the history of the cell line became known.

“The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout US history,” the lawsuit read.

Initially, the multinational organization tried to have the case dismissed, citing that the case was taken to court after the statute of limitations had expired –  a period of time after which a lawsuit can be dismissed. But the Lacks family’s lawyers fended that off by declaring that the company still benefited from the cells, and so, the claims did not apply.

“There is a widespread consensus today that the theft of Ms. Lacks’ cells, was profoundly unethical and wrong. Despite this, one of the largest biotechnology companies in the world – Thermo Fisher Scientific – has continued to mass-produce and sell Ms. Lacks’ bodily tissue for its own profit without permission of Ms. Lacks’ Estate,” the lawsuit read. “Thermo Fisher Scientific has made staggering profits by using the HeLa cell line – all while Ms. Lacks’ Estate and family haven’t seen a dime.”

The case, which came to a close last month, saw that both sets of lawyers – from the Lacks family and Thermo Fisher – had resolved the matter, according to a joint statement put out by the two parties. However, the terms of the settlement remain confidential.

Although what this signifies for others whose tissues were commercialized without their permission, is not certain yet, since Lacks’ case is one of a kind, it still opens doors for people seeking redressal based on claims of the lack of informed consent. 

For instance, when consent forms don’t mention clauses like “We may commercialize your tissue”, an unjust enrichment claim can be brought to court on the basis that consenting to research and surgery does not imply that you are allowing for your DNA to be commercialized, lawyer Lori Andrews of the Chicago-Kent College of Law told Science.

Moreover, even during times when these phrases are buried in a bundle of paperwork that uses language that patients can’t necessarily decode, a case of unjust enrichment might still be valid in court.

Are there other notable cases of racial exploitation in research?

Henrietta Lacks’ stolen cells are not the only example of medical exploitation in the Black community. The Tuskegee study, which began in 1932 and lasted about four decades, is a testament to the racial exploitation that was prevalent at the time. 600 Black men, 399 who were diagnosed with syphilis and 201 who did not have the disease, were enrolled in a study, where those who were syphilis positive, were lied to and told that they would receive treatment for syphilis. But in reality, they received no treatment at all. The study, which aimed to ‘observe the natural history of untreated syphilis’ in men, is considered to be a horrific case of racial injustice.

Another instance that highlights medical discrimination, took place in the 19th century. Black women who had been enslaved were operated on without being given anesthesia by a doctor who claimed that Black people could endure more pain than white people – a case that was brought up in a brief that was filed by the Lacks family’s lawyers. Yet, today, the surgeon James Marion Sims who performed these experimental surgeries, is regarded as the father of modern gynecology.

HeLa cells: anchoring research for decades

The story of the HeLa cells drew attention after science writer Rebecca Skloot’s book The Immortal Life of Henrietta Lacks was published in 2010, which was then turned into a movie starring Oprah Winfrey as Lacks’ daughter.

Presently, Lacks’ tissues are considered to be a linchpin in medical research. The cells helped lay the groundwork for the polio vaccine in 1953, two years after her death. They were even taken to outer space in the 1960s, as a means to gauge how human cells would react to radiation, and how space travel would impact astronauts. Over the years, her cells have shed light on blood disorders and infectious diseases, and expedited research in cancer, cervical cancer specifically – which led to a Nobel Prize for German virologist Harald zur Hausen in 2008. And, in recent times, these cells have accelerated COVID-19 research.

When the effect of COVID was studied on HeLa cells, it was found that the virus did not infect the cells well. Further research led to the understanding that for the virus to enter human cells, it required a molecule called ACE2, which was absent in Lacks’ cells. When the HeLa cells were engineered to display the molecule, scientists were able to establish ACE2 as the doorway for the pathogen to bind to it. Researchers also explored the mechanism behind how the virus invades the human body using HeLa cells, in the hunt for COVID vaccines.

With the lawsuit now settled, this case could even set a precedent for similar unjust enrichment claims in the field of medical research. And so, like her cell line, Henrietta Lacks’ legacy might still live on.

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