Perhaps the most famous case of patient rights can be found in the cautionary tale of one seemingly ordinary woman, and her family’s decades long fight for justice.
No one, bar her doctors and lead researchers, were privy to the origins of her cells, not her name, age, nor any details about her life. While her ‘immortal’ cells would enable researchers around the world to conduct experiments that could not be tested on living humans – driving decades worth of innovation – it would be two decades before the mystery of Henrietta Lack’s identity would be revealed. And even more years before her surviving family would get answers.
The story begins – as so many do – with a patient walking into a hospital, looking for help.
She was a tobacco farmer, but had moved to Turner Station in Baltimore with her husband and two young children, having heard promise of greater fortune from those working in the area.
A year before her official diagnosis, Henrietta began to suspect something was wrong. She shared her worries with her cousins, saying that there was a “knot inside” of her. Her cousins tried to convince her to see a doctor, but Henrietta didn’t, and a week later she discovered she was pregnant. She carried her baby to term, but every after birth, she still didn’t feel right. On a referral from a local physician, Henrietta went to John’s Hopkins hospital to seek answers. On 29th January 1951, she and her husband made the 20-mile journey to the hospital, which was also a renowned research centre.
Dr Howard Jones, the gynaecologist on duty, examined Henrietta, and found a solid lump, about the size of a nickel, exactly where she described. The tumour was nothing like Jones had ever seen before (or would see again according to a later interview). It was as his notes described, like “grape Jello”.
The appearance of the tumour was perplexing; Henrietta had recently given birth, and yet there was nothing about any abnormalities in her medical history. Surely someone would have noticed a tumour that size during her pregnancy? The only conclusion was that the tumour must have developed at a rapid speed – not a good sign.
He cut a tiny biopsy of the tumour to confirm that it was indeed cancerous. Then he sent Henrietta home to await the results. A few days later, confirmation came “Epidermoid carcinoma of the cervix, Stage I.”
In 1951, it was standard practise to conduct medical research on public ward hospital patients without their consent, mostly viewed as a quid-pro-quo exchange for receiving free healthcare. Informed consent wasn’t a term that was coined, so no legal or ethical standard existed in the US for obtaining it. At Hopkins, the leading cervical cancer expert, Richard Telinde, believed it was a payment for services.
Without Henrietta’s knowledge, a sample of her tumour was sent to the nearby lab of Dr George Gey, the head of tissue culture research at Hopkins. For years, Gey had been trying to grow and keep alive human cells outside of the body in petri dishes, but to no avail.
Henrietta, meanwhile, was treated with radium, an astoundingly radioactive element that, if delivered in high enough doses, can actually cause cancer. At first it appeared to be working, but soon enough, more and more tumours began to appear throughout Henrietta’s body, and she was in immense pain. Although doctors tried to ease her suffering, it was no use. And at 12.15am on the 4th of October 1951, she died in her hospital bed. Her body was returned to her home in Clover, where she was buried in her family plot, in an unmarked grave next to her mother.
Pushing aside any initial misgivings, she diligently set to work slicing the cells, preparing the culture medium, and marked the samples the same way she had labelled most cultures, using letters from the patient’s first and last names: HeLa.
When Mary returned the next morning, she was surprised to find that Henrietta’s cells had multiplied, and they kept multiplying at an astonishing rate, expanding into as much space as Mary would give them.
This was – to say the least – highly unusual. Ecstatic, Gey described the cells as growing “like crabgrass”. Soon enough, he began to share the discovery of these ‘immortal’ cells with some of his closest colleagues. And when these confidents requested samples for their own studies, Gey happily obliged.
Mass distribution of live cell cultures via mail wasn’t exactly a common practise at the time. So, instead Gey opted to transport the HeLa cells by plane. But, as demand for the cells grew, it became evident to all that a new distribution system was sorely needed. And so, in 1952, Gey experimented with a handful of tubes containing HeLa cells, which he packed into a tin lined with cork and ice and shipped to Minnesota. Freezing the cells turned out to be a resounding success, and marked the first instance of live cells being successfully shipped in the mail.
That same year, only a few months after Henrietta’s untimely passing, her cells would further cement their importance in medical history, when American virologist Jonas Salk put out a call to culture experts to help find samples for a large-scale test of his newly developed polio vaccine. For Gey, it was a valuable opportunity: HeLa was a perfect fit for testing the vaccine.
The infamous Tuskegee Institute was chosen to house a new HeLa Distribution Centre. With William Scherer from the National Foundation for Infantile Paralysis at the helm, the Institute steadily expanded operations, producing a whopping 25,000 tubes of HeLa every week.
Soon enough, surging demand for HeLa cells overwhelmed the production line at the Tuskegee Institute. In an abandoned Fritos factory, a new microbiology company was established to accommodate the need for HeLa. It was a flurry of excitement and innovation for the scientific community. But, while her cells quickly found their way into labs around the world, available for scientists to buy for roughly ten bucks a pop, Henrietta’s real name, her life, and her legacy was left behind.
Back on Earth, the decade proved to be something of a mixed bag for HeLa. Having witnessed year after year of astounding success, shedding light on treatments for blood disorders, helping researchers to understand the impact of X-rays, and playing a fundamental role in developing cancer research methods, the HeLa train was chugging along at top speed. That was, until 1966, when geneticist Stanley Gartler took to the stage at a conference for cell culture scientists and, in front of George Gey himself, delivered what would later be dubbed the ‘HeLa bomb’.
During his presentation, Gartler revealed that the 18 most commonly used cell cultures shared a rare genetic marker, only found in a small minority of Black Americans. Having received confirmation of Henrietta’s race only a few short months prior, Gartler was certain that the presence of these rare cells in multiple cultures illuminated a serious ‘technical problem’ in the field of cell culture research. While the risk of contamination from bacteria and viruses was well understood, what researchers didn’t know was that HeLa cells could latch onto skin, clothing, shoes, it could travel on dust particles and drift through ventilation systems. In short, they could easily contaminate and take over other cultures.
His remarks had disastrous implications. If what he said was indeed true, millions of dollars in research would now be worthless. Unsurprisingly, his findings were met with a remarkable display of scientific hubris, with audience members opting to attack Gartler’s competency, rather than heed his warning. But not everyone in the audience was so quick to dismiss the claim. Several researchers, including future president of the American Type Culture Collection, Robert Stevenson, began to test for the genetic marker in their labs – and, boy, did they find it. Realising the potentially devastating scope of the HeLa contamination, they set to work developing genetic tests to identify HeLa cells in culture.
It was these genetic tests that would eventually lead scientists to cross paths once again, with the unsuspecting family of Henrietta Lacks.
In an effort to pay homage to their former colleague, several doctors from Johns Hopkins penned an article dedicated to his work in ensuring the legacy of HeLa. To refresh his memory of the case, one of these writers – Howard Jones – decided to revisit Henrietta’s medical records, including the photographs of her biopsy. Upon seeing the documents, Jones was sure that Henrietta had been misdiagnosed. To confirm his theory, he turned to a time capsule of sorts, which had sat undisturbed on a shelf, since 1951 – Henrietta’s original biopsy sample.
When the tribute to Gey was finally published in 1971, the authors asserted that Henrietta’s tumour had been ‘misinterpreted’ by the original pathologist, and in fact was not an epidermoid cancer, but stemmed from glandular tissue in her cervix. Although this revelation would not have changed Henrietta’s treatment, or fate, the article did right one significant historical wrong. Henrietta Lacks was no longer anonymous, unknown, or even the misreported ‘Helen Lane’. For the first time, her real name was there in print for the world to see.
Just three weeks after Henrietta’s name was revealed, US President Richard Nixon’s War on Cancer thrust HeLa back into the spotlight. In a story befitting a spy novel, a battle between contamination theory supporters and naysayers raged, with Walter Nelson-Rees hired by the National Cancer Institute to help curb the problem. During his tenure, Nelson-Rees became renowned as a persistent watchdog, publishing “HeLa hit lists” in Science, which listed any contaminated lines that he had uncovered. No warning, no mercy.
Elsewhere, news that Henrietta’s cells had been taken, grown, and sold the world over had finally reached the ears of the surviving Lacks family. Unsurprisingly, they were not best pleased to learn what had become of the last surviving piece of their loved one.
Unaware that the Lacks family had any knowledge of HeLa, in 1973, researchers gathered to discuss the issue of contamination at the First International Workshop on Human Gene Mapping. During the discussions, it was pointed out that specific genetic markers could be used to identify which cells stemmed from Henrietta. The only problem was that this would require a DNA sample from a close family member.
For years, Henrietta’s life had been deliberately separated from HeLa, but in 1973, that changed when researchers actively sought out family members to donate blood. What exactly was said to the Lacks to explain the situation is uncertain, nonetheless, Henrietta’s relatives obliged. Findings from this research were later published, including personal medical information for the family members, an unthinkable action by today’s standards.
But the more that the Lacks family learned about the development and commodification of HeLa, the more they questioned and contested the situation. There is no record that Gey or Johns Hopkins profited from HeLa, but many companies have. But what rattled Henrietta’s daughter, Deborah Lacks most, was the repeated misnaming of her mother as ‘Helen Lane’.
During this period, the human immunodeficiency virus (HIV) emerged as a global health crisis. HeLa cells played a crucial role in studying the virus’s behaviour, offering insights that contributed to the development of diagnostic tests and antiretroviral drugs. Additionally, HeLa cells became integral to cancer research, aiding in the exploration of new therapies and treatment modalities.
Notably, in 1984, HeLa cells were used to uncover secrets from the very condition that led Henrietta to Johns Hopkins. HeLa cells served as a crucial testing ground for HPV vaccine candidates, facilitating the evaluation of their efficacy and safety. This research marked a significant stride towards the eventual introduction of vaccines designed to prevent cervical cancer, demonstrating the practical applications of HeLa cells in the pursuit of public health interventions.
Dr Francis Collins meets with family members of Henrietta Lacks at Johns Hopkins University in Baltimore where he delivered the keynote address of the Henrietta Lacks Memorial Lecture. From left to right: Devin Lacks, Alyana Rogers, Dr Francis Collins, Jabrea Rogers, and Dorian Lacks. Credit: Public domain, via Wikimedia Commons
However, the 1980s also saw heightened ethical scrutiny surrounding HeLa cells and the broader context of cell research. Questions of consent, privacy, and the commercialisation of biological materials became prominent ethical considerations. As HeLa cells contributed to vital advancements in understanding and combatting HPV, increased awareness of Henrietta Lacks’ legacy underscored the importance of ethical guidelines in biomedical research, setting the stage for ongoing ethical discussions in the years to come.
Around this time, efforts to get the state to recognise Henrietta ramped up. These attempts proved successful, with Maryland State Senate and the House of Representatives both publicly acknowledging and honouring Henrietta. But despite persistent requests to recognise Henrietta, Johns Hopkins refused to accept any accountability. Hopkins did, however, state that it never profited in any way from HeLa.
The publicity surrounding Henrietta and the HeLa cells fuelled ethical debates surrounding consent – and attracted some unwanted attention. Early attempts to pursue legal claims to Henrietta’s legacy turned out to be a con scheme, concocted by a distant family relative looking to cash in on the family’s ongoing struggle. Shortly after the plot was uncovered, the BBC documentary The Way of All Flesh aired. But the weight of the whole saga was too heavy for Deborah to bear, and the stress began to impact her health.
In cancer research, HeLa cells continued to be instrumental, aiding in the development of anti-cancer drugs and the exploration of innovative treatment strategies. Scientists utilised HeLa cells to understand the molecular mechanisms driving cancer progression, identify potential drug targets, and refine approaches to precision medicine.
The 2000s also marked a pivotal moment in recognising Henrietta Lacks’ legacy. The publication of Rebecca Skloot’s The Immortal Life of Henrietta Lacks brought Henrietta’s story to the forefront, sparking discussions about bioethics, patient consent, and the commercialisation of human biological materials. This renewed attention prompted initiatives to honour Henrietta Lacks and address the ethical implications surrounding the use of her cells.
Moreover, the decade saw a rise in legal challenges to stop the nationwide practice of storing and conducting research without consent. Plus, in 2006, a National Institutes of Health (NIH) researcher was charged with violating a federal conflict-of-interest law for providing thousands of tissue samples to Pfizer in exchange for about half a million dollars.
Simultaneously, the establishment of the Henrietta Lacks Foundation in 2011 aimed to empower Lacks’ descendants and influence the use of HeLa cells. Among its objectives, the foundation sought to ensure that the Lacks family played a role in decisions regarding the use of HeLa cells in research.
The decade also saw a shift towards acknowledging the rights and agency of the Lacks family concerning the use and commercialisation of HeLa cells, representing a milestone in the ongoing effort to reconcile the scientific community’s reliance on HeLa cells with the ethical imperative to respect the contributions and wishes of the donors and their descendants.
Significantly, Johns Hopkins actively began to publicly acknowledge its role in the Henrietta Lacks story. Early in the decade, the institution launched the inaugural Henrietta Lacks Memorial Lecture – a series that continues to this day – to honour Henrietta and the global impact of HeLa cells on medicine and research. After this, in a statement released in 2017, Johns Hopkins denied that it had profited from the cells, noting: “Johns Hopkins never patented HeLa cells, and therefore does not own the rights to the HeLa cell line.” The following year, Hopkins announced plans to name a research building in honour of Lacks.
In 2021, the Lacks’ estate set their sights on one biotech in particular, Thermo Fisher. In a federal lawsuit filed against the company on the 70th anniversary of Henrietta’s death, attorneys for the Lacks estate accused Thermo Fisher of unjust enrichment, arguing it illegally commercialised Lacks’ genetic material and asked the court to order the biotech to “disgorge the full amount of its net profits obtained by commercialising the HeLa cell line to the Estate of Henrietta Lacks.”
The legal battle continued for nearly two years, until, in August 2023, news broke that the two parties had reached a groundbreaking settlement agreement. While the terms remain confidential, representatives from both the Lacks family and Thermo Fisher reported that their clients were ultimately pleased with the outcome.
Buoyed by their success, the estate of Henrietta Lacks quickly embarked on another legal journey, this time filing a lawsuit against the biopharmaceutical company Ultragenyx Pharmaceutical. The lawsuit alleges that Novato, California-based Ultragenyx, which develops treatments for rare genetic diseases, uses the famous “HeLa” line of cells “like a dairy farm treats cows” to mass-produce materials for gene therapy. Results of this new legal challenge are still pending.
While the battle over profits continues, Henrietta’s overall contribution to the medical world is invaluable. The excitement of court proceedings may dominate headlines, but, behind the scenes, the importance of the HeLa cell line continues to be showcased around the world, helping to drive cancer research that will be used to help treat patients – just like Henrietta herself.
But equally important, though, is the woman who unknowingly provided the world with the power to help millions. For there is no HeLa cell line without her, and you cannot separate the two. The immortal woman, and a legacy of life.
Eloise McLennan is the editor for pharmaphorum’s Deep Dive magazine. She has been a journalist and editor in the healthcare field for more than five years and has worked at several leading publications in the UK.