Breakthrough and controversy: the scientific and ethical legacy of Henrietta Lacks and her immortal HeLa cells

Regarded from the perspective of expanding the knowledge base, there can be little doubt that the discovery and exploitation of the HeLa cell line is one of the most consequential stories in the history of medical research. But that is only one view.

HeLa cells have led to countless scientific breakthroughs and the creation of medicines that have saved literally millions of lives – the polio vaccine being just one example – but the darker side of HeLa’s tale has one family’s tragedy at its centre, deeply mired in questions surrounding the lack of medical ethics, informed consent and racial justice.

On 29 January 1951, Henrietta Lacks, a 31-year-old African American woman, tobacco farmer and mother of five, sought treatment at Baltimore’s Johns Hopkins Hospital upon experiencing severe abdominal pain and unusual bleeding. This was still the era of racial segregation in America. At that time, Johns Hopkins, situated in Maryland, was a segregated hospital (it remained so until 1957). But unlike other medical institutions, it would treat African Americans, even if the treatment offered differed from that given to white patients.

Biopsy

Henrietta was diagnosed with an aggressive form of cervical cancer and despite treatment, died on October 4 that year. Cancerous cells were taken from Henrietta’s cervix as part of a diagnostic biopsy. But not all of those cells had been used in the determination of her disease or in the consideration of her care plan.

An additional portion of the cells removed in the biopsy were taken – deliberately – to be propagated in vitroby John Hopkins’ Tissue Culture Laboratory, which was led by cell biologist Dr. George Otto Gey. Harvesting of cells in this way was routine practice in many hospitals in the United States at this time.

Gey and his team had been working to grow human cells in vitro but all the others that he had tried had eventually died in culture. However, Gey’s laboratory assistant, Mary Kubicek, cultured Henrietta’s biopsy cells, using a roller-tube technique and observed that they grew robustly, doubling every 20 to 24 hours. It was a remarkable discovery that the cancerous cells taken from Henrietta’s cervix continued to survive and thrive.

Prior to the HeLa cells’ discovery, scientists had struggled to keep cells alive outside the human body for an extended period of time. Henrietta’s cells, however, proved to be resilient and would multiply indefinitely when maintained under the right laboratory conditions. Such a population of cultured cells that multiply in laboratory conditions for research purposes is called a cell line.

Gey’s lab team named the cell line ‘HeLa’ after the first two letters of Henrietta Lacks’ first and last names according to their usual notation system. These cells were the first so-called ‘immortal human cell line’ revealed to science.

But for more than twenty years, in an obfuscation that has remained unclear, the cells were initially – and wrongly – attributed to another donor who was called either ‘Helen Lane’ or ‘Helen Larson’. It was not until 1973 that the correct identification of the cell’s origins was revealed in an investigation by the journal Nature.

Paradigm shift

The game-changing impact on medical research science made possible with the HeLa cell line is to understate their effect – it was an absolute paradigm shift. The cell’s ‘immortality’ and resilience made them ideal for use in laboratory experiments and this led to many substantive therapy developments:

• Vaccines: HeLa cells were instrumental in the lab testing of the inactivated polio vaccine developed by Jonas Salk in 1955.
• Oncology: HeLa cells have been used extensively to study cancer growth, leading to innumerable improvements in treatments.
• Virology: HeLa cells played a crucial role in better understanding HIV/AIDS and other viral infections.
• Genetics: HeLa cells made a significant contribution to the Human Genome Project and added to scientific understand of human DNA and its genetic disorders.

Indeed, some HeLa cells have even been sent into space as part of a study into the effects of zero gravity on human cells.

Disordered ethics

It is entirely true to say that HeLa cells have transformed medicine but what was – and should not be – ignored is that their use has also raised many ethical concerns.

Henrietta was never told that some of her cells were to be taken for use in research. While the concept of informed consent was not a standard practice at the time – and to this day is still not always required in the United States – there was a conscious lack of transparency that appears all the more troubling when considered within the historical context of segregation .

Indeed, the exploitation of the HeLa cell line has generated many millions in profits from the medical and pharmaceutical advances that they enabled. And for many decades the Lacks family received neither recognition nor financial compensation.

Considerations of privacy were also overlooked, with genetic information derived from the HeLa cells being published without the Lacks family’s permission, again, for decades after her death.

And Henrietta’s case forms part of a broader history of racism and the medical exploitation of black patients where many were subjected to unethical medical practices, most notable the ‘Tuskegee Study of Untreated Syphilis in the Negro Male’ which was initially intended to run for six months in 1932 but was extended again and again before concluding in 1972. In this study, Black men with syphilis were denied treatment in order to study the disease’s progression, even after penicillin in 1946.

Alongside other minorities, African American women underwent forced sterilisation as part of eugenics programmes in the early 20th century. There are many other cases in which African Americans’ bodies were used in medical experimentation without proper consent and at a higher rate than other population groups.

But through the revelations of the Tuskegee scandal in the Belmont Report in 1979, and establishment of the Common Rule in 1991, it became a requirement to explicitly gain consent for the collection and use of human tissues for research in the US. The 1979 report also directly led to the establishment of the US Office for Human Research Protections within the US Department of Health and Human Services to ensure ethical standards of behaviour were in place for all human research.

Some commentators reached for this history to explain the reluctance of some African Americans to seek treatment for and get vaccinated against COVID-19, a disease that disproportionately affected African Americans.

Seen as part of this history, the case of Henrietta Lacks is another incidence in which an African American patient has been deprived of bodily autonomy in a medical setting, raising critical questions about racial equity in both healthcare and research contexts.

In 2013, the genome sequence of HeLa cells was published without Henrietta Lacks’ family’s permission, which exposed parts of their own genetic information publicly. This act raised serious privacy concerns, as genetic data can reveal predispositions to hereditary diseases, which can result in risks of discrimination in employment and insurance.

Following backlash, the National Institutes of Health reached an agreement with the Lacks family, granting them limited control over access to the HeLa genome through the HeLa Genome Committee. However, this case highlights the ongoing ethical concerns about how genetic data is handled and the need for stronger protections in genomic research.

Recognition and justice

The story of Henrietta Lacks and her immortal cells line remained largely unknown until science journalist Rebecca Skloot published The Immortal Life of Henrietta Lacks in 2010. The book drew attention to Henrietta’s contributions to modern medicine through the HeLa cells and helped to bring about an environment where these historic injustices could be acknowledged. A foundation has been created in her name which provides financial assistance to families that have been affected by unethical medical research.

Around the world, universities, research institutions and museums have honoured Henrietta Lacks with statues and named buildings after her. But perhaps most importantly, her story has led to legal and policy changes, spurring broader discussions about informed consent, patient rights and bioethics.

A film of Skloot’s book was released in 2017, with Oprah Winfrey as Henrietta’s daughter Deborah and Rose Byrne as Skloot.

Johns Hopkins University, where the HeLa cells were first taken, has made efforts to honour her legacy, and the World Health Organization has recognised Henrietta Lacks’ contribution to global health. Johns Hopkins’ has also recognised HeLa’s impact with scholarships, engagement with local schools and an annual symposium. And in 2016, Johns Hopkins committed to naming a new building (yet to be built) on the medical campus, and established a graduate-level scholarship at the school of medicine in her honour.

In addition, the Johns Hopkins Urban Health Institute awards a $15,000 Henrietta Lacks Memorial Award to: ‘highlight the importance of community-university collaborations, and recognise, support and promote exceptional programmes developed jointly by university members and local community groups’.

In conclusion

The HeLa cell line has left an indelible mark on medical science, revolutionising research and treatment in countless ways. However, the ethical issues surrounding their use serve as a powerful reminder of the need for transparency, informed consent, and respect in medical research. Henrietta Lacks' legacy is twofold: she is both a silent pioneer of modern medicine and a symbol of the importance of ethical standards in scientific advancements. Today, as researchers continue to work with HeLa cells, they should do so with a greater awareness of the ethical responsibilities that come with scientific discovery.