Medicine is often presented as a field built on progression, but its history tells a more complicated story. Discrimination has long shaped medical practice, affecting people differently based on factors such as race and social status. In many cases, those with the least power were not only denied proper treatment, but were also used in the name of scientific advancement. The Tuskegee Syphilis Study is one of the most well-known examples. For decades, hundreds of African American men with syphilis were deliberately left untreated, even after penicillin (an effective treatment) became widely available, ultimately leading to more than one-hundred preventable deaths. Cases like this reveal how easily ethical boundaries were ignored when the subjects were marginalised. Although modern medicine has introduced stricter ethical standards, such as informed consent, these are relatively recent developments. The story of Henrietta Lacks emerges from the same scientific environment, where progression often came at the expense of individual rights. Her cells would go on to revolutionise biomedical research, but the circumstances under which they were taken continue to raise important ethical questions today.
Before we go into the scientific ramifications and ethical problems raised, it is important to understand the history of Henrietta, after all, science has for too long dehumanised people in the means of endeavour. Henrietta Lacks, whose actual birth name was Loretta Pleasant, was an African American woman born in Roanoke, Virginia, on the 1st of August 1920.[1][2] After giving birth to her tenth child, Henrietta’s mother died when Henrietta was just 4 years old.[2]
As a young woman, she moved to Turner Station, Maryland, a poor Black community near Baltimore.[3] There she married her first cousin, David Lacks, and changed her name to Henrietta, and had 5 children together.[3] To support her family, Henrietta worked the same tobacco fields she had known as a child. While the role of a mother is most certainly awe-inspiring on a personal level, there was nothing truly extraordinary about the nature of Henrietta. Friends described her as warm, funny, and fiercely devoted to her children. She loved to dance and sew. But her body was a different matter.[3][4]
Figure 1: Henrietta Lacks . . . 'Take care of them kids. Don't let nuthin happen to them,' she told her husband as she lay dying.[A]
Early January 1951, Henrietta felt a sort of ‘knot’ in her abdomen, coupled with unusually heavy bleeding.[4] While in the midst of the 20th century, as a poor Black woman in segregated America, Henrietta was forced to seek help in a distant John Hopkins Hospital – one of the few institutions in the region that accepted Black patients, though often in separate wards.[4][5] She went there seeking help. She did not go there to become a scientific instrument.
And thus, on February 1st, she arrived at the hospital and was examined by Dr Howard Jones, who discovered a large, purple cervical tumour.[6] Diagnosis: epidermoid carcinoma of the cervix, an aggressive form of cervical cancer.[6] Treatment began immediately – radium therapy, the standard at the time – but Henrietta would eventually die from the disease on October 4, 1951, at the young age of 31.[7]
Figure 2: When you have cervical cancer, cancerous tissue forms on the surface of your cervix.[B]
Now, the true horror that this article will focus on isn’t the segregation of people of colour, especially women of colour, faced in a prejudicial America, nor the standards of therapy for cancer. Rather, it is the aftermath of her death, what happened in the examination room, that changed the history of medicine irrefutably, and the day ethics died. During Henrietta's initial biopsy, Dr George Gey, the head of tissue culture research at Johns Hopkins, received two samples of her tumour. One sample was used for diagnostic pathology, whilst the other was sent to Gey's laboratory, without consent.[7]
No law required informed consent for tissue samples taken during surgery or biopsy, and so, patients, particularly poor patients, and especially Black patients, were not asked for permission.[8] This sample of cells was labelled by Dr Gey as ‘HeLa’ - the contraction of her name – and remains as a totem highlighting the injustice she faced to this day. And when Henrietta died eight months later, Gey did not attend her funeral. Instead, his lab assistant travelled to Baltimore to collect more cells from her body during her autopsy – again without consent, this time from a corpse.[7] But why do these cells even matter?
Henrietta Lacks went to Johns Hopkins to be healed. Instead, without ever being asked, she became the source of the first immortal human cell line in history.
Before we broach the immortal cells, we must first give our attention to its very concept: what is immortality? Most differentiated cells have a specific number of divisions which they can undergo, before they age and die via apoptosis (programmed cell death). This limit, specifically 52 divisions, is known as the Hayflick’s limit. But cancer cells don't follow said limit all the time. And HeLa cells were just a tad bit more special.
What Dr George Gey discovered in his lab was that Henrietta Lacks's cells did not die. They kept dividing, as days became weeks and weeks became months. There were no signs of slowing down in growth, mimicking this exponential growth. No scientist had ever seen such a miracle.
The root cause of this: Henrietta's cervical cancer. It was a ‘perfect’ storm of an amalgamation between viral oncogenesis and chromosomal maintenance.[9] Her cancer was specifically caused by an aggressive strain of human papillomavirus (HPV-18), leading to the production of viral oncoproteins E6 and E7, which effectively degrade the cell’s natural tumour suppressor proteins p53 and pRb.[9][10] Whilst disabling p53 ensures the cell can’t undergo apoptosis, pRb being inactivated results in the lack of regulation during the G1/S checkpoint, thus causing continuous cellular division.[11]
Figure 3: Inactivation of the human papillomavirus E6 or E7 gene in cervical carcinoma cells
However, this still doesn’t fully explain the bypassing of Hayflick’s limit, for which we need to understand the primary cause of such a limit: telomeres. Telomeres are hexametric (TTAGGG)n repeats at chromosome ends.[12] Usually, during cellular mitosis, telomeres are eroded away with each cell cycle, simply because DNA polymerase can’t replicate the ends of a chromosome, so during S phase, a section of this telomere is left uncopied (the End-Replication Problem).[13][14] This is the purpose of telomeres: they protect the rest of the actual genes on the chromosomes from being lost. Moreover, they prevent DNA repair from happening at the ends of chromosomes because the DNA machinery can mistake these ends for DNA double-strand breaks – one of the most cytotoxic forms of mutations.[15]
Figure 4: Position of the telomere on a chromosome, highlighted in orange.[D]
Thus, these telomeres, in normal cells, act as a marker of senescence, where the moment the telomeres are fully shortened, the cell can no longer replicate and divide, thus ageing and dying.
However, in HeLa cells, the hTERT (human Telomerase Reverse Transcriptase) gene is upregulated, likely due to the genomic instability caused by the HPV-18 integration.[16] This overactive telomerase ribonucleoprotein functioned as a reverse transcriptase, synthesising new telomeric DNA to replace what was lost during division, effectively ‘restarting’ the clock with every division.[16] Thus, this continuous maintenance of telomere length above a critical threshold allows the bypassing of Hayflick’s limit and thus avoids replicative senescence.[17]
HeLa cells were used in the 1950s by Jonas Salk in his experiments in testing the efficacy of his polio vaccine via the neutralising effect of vaccine antibodies on the poliovirus after being exposed to it.[18] HeLa cells displayed human chromosomes for the first time in laboratory experiments conducted in 1953; this paved the way for diagnoses of Down syndrome.[19] In 1983, Harald zur Hausen discovered that HeLa cells contained HPV 16 and HPV 18 DNA, providing the cause of cervical cancer and its vaccine.[20]
Perhaps most importantly, HeLa became the standard model for chemotherapeutic drug screening by the National Cancer Institute, including Taxol and cisplatin.[21] The CD4 receptor was introduced into HeLa cells to allow further antiretroviral experimentation and research.[22]
The family of Henrietta Lacks had no knowledge about the HeLa cell line used for extensive commercial purposes till then. For decades, vials of HeLa cells had been sold by biological supply companies, including firms that later consolidated into Thermo Fisher Scientific, one of the world’s largest biotechnology companies.[23][24] One vial costs hundreds of dollars. Globally, millions of vials were given. The total economic value that HeLa cells have created is hard to put a precise figure on, but it is billions.
None of this revenue got to the Lacks family. Henrietta's children experienced poverty growing up. They were unable to afford health insurance. Her daughter, Deborah, suffered from hearing loss and seizures but lacked access to consistent medical care.[25] Her son Zakariyya, who had been an infant when Henrietta died, spent years struggling with addiction and homelessness.[26] Although pharmaceutical companies profited from drugs that HeLa made possible and biotech companies profited from selling HeLa cells themselves, Henrietta’s descendants live in the same poor neighbourhoods where she raised them.
For many years, the Lacks family got nothing from the money HeLa cells brought in, even though it was worth billions. It looks like this is changing.
German scientists published the HeLa Genome without permission from the Lacks family in 2013.[27] But soon, an agreement was made between the National Institutes of Health and the Lacks heirs. As per this agreement, all data on HeLa genomic sequences should be submitted to a government-controlled database managed by a panel including two members from the Lacks family.[28][29] For the first time ever, a family got to govern biological material obtained without their permission.
Figure 5: New Henrietta Lacks Building at John Hopkins Hospital, paying respect to the biomedical research pioneer.[E]
In 2021, Thermo Fisher Scientific reached a settlement with the Lacks family, who produce HeLa cells.[29] The terms of this agreement are unknown, but it was the first payment in connection with the commercial use of Henrietta's cells. In 2024, the research building of Johns Hopkins University was named Henrietta Lacks.[30]
Henrietta Lacks’ story is really about more than science. It shows how marginalised people were often left out of decisions that directly involved their bodies, and how the effects stayed hidden for decades. Only in the 21st century did more of these stories start to come into public view, forcing a question of how medical research has been done and who it has benefited. HeLa cells sit in an uncomfortable space- they helped drive huge scientific progress, but also came from a system that didn’t treat everyone fairly. It raises a bigger question that still matters today. Can science and society actually move forward together, or does progress risk repeating the same patterns if ethics are ignored? Henrietta Lacks’ legacy doesn’t give an easy answer, but it does make one thing clear- what science achieves matters, but so does how it achieves it.
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Figures:
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