In 1951, a poor black woman was admitted to a public ward in a hospital in Baltimore suffering from advanced cervical cancer. She died a few months later and was buried in an unmarked grave by her family in rural Virginia. But within a short time, she was resurrected as 'HeLa', acknowledged in thousands of research papers, in books on medical and scientific advances, in Nobel Awards, and in pharmaceutical catalogues at the centre of a multi-billion dollar industry. Described as the first 'immortal', her full name was Henrietta Lacks.
During the late 1950s, as a technician in the National Collection of Industrial Bacteria, I became responsible for the freeze-drying and dispatch of ampoules of bacteria to customers who ordered samples from the catalogue.
Different kinds of bacteria are used in a wide range of industrial processes such as the production of many foodstuffs – bread, wine, yogurt, vinegar, cheese and many fermented vegetable, meat and fish products; in the manufacture of biofertilisers, paints, antibiotics and drugs; and in combating metal pollutants. During their use in the hurly burly of the various industrial processes, the bacteria involved could mutate, or become contaminated, so the manufacturers regularly restocked with the pure strains which were maintained, catalogued and regularly monitored for purity by the bacteriologists working in the Collection.
These bacteria could readily be put into suspended animation by the process of freeze-drying in small ampoules, which could then safely be sent around Britain and the rest of the world, with instructions on how to reanimate and maintain the culture. I recall the bug which caused nappy rash was regularly ordered by Johnson's baby cream manufacturers.
But there was one type of cell which could not be dealt with in this way, and it was a focus of real frustration to medical researchers. Unlike the bacterial cells which the Collection dealt with, human cells would not thrive or reproduce in cultures outside the human body. Once they were removed from living tissues, human cells simply died. If this difficulty could be overcome, much experimental medical research could be done in vitro, i.e. in a test tube, rather than was the case then, on live animals or on human subjects.
One problem was identifying what nutrient they needed to stay alive. They did not survive when put into any of the standard nutrients which had been found to be efficient in keeping other cells such as bacteria alive, and in the 1950s many researchers, such as Dr George Gey, a cell biologist in the Johns Hopkins Medical School, were determined to resolve this difficulty. He regularly picked up samples of human tissue which had recently been removed from patients in the nearby Johns Hopkins Hospital and experimented with cultures to try to keep the cells alive.
Gey tried everything – plasma and blood from chickens, puré of calf foetuses, blood from human umbilical cords – nothing worked, the cells soon died. But in one of the batches of tissue samples sent to him was one labelled 'HeLa', taken from a tumour in a cancer patient in the hospital.
Gey and his staff were sceptical at first when cells from this tumour seemed to survive, but soon they realised they were not only surviving, but replicating at a phenomenal rate. And although they were derived from a cancer tumour, they showed most of the key characteristics of normal human cells. Gey told a few of his closest colleagues that he thought his lab might have succeeded, at last, in growing the first 'immortal' human cells. To which they replied: 'Can I have some?' And Gey said: 'yes'.
He then quickly developed a method of sending out live cultures of the cells with instructions on how to keep them viable. They were discovered to be susceptible to the polio virus, and their use was subsequently found to be invaluable in developing vaccines e.g. for polio, measles, mumps, herpes, encephalitis, HIV, tuberculosis; in the testing out of antibiotics and in the development of chemotherapy. Cultures were sent all over the world and increasingly used in the development of a wide range of experimental treatments which avoided using and hazarding human beings.
They were used to investigate the effects of radiation from nuclear bombs on human cells; they were shot into space in the earliest US and Russian satellites to judge the safety of gravitational changes; they were frozen and revived under a range of conditions, resulting in knowledge of how frozen eggs from humans could be stored and revived without harm. Thereafter, worldwide IVF services flourished. The potential use of HeLa cells in the development of future revolutionary forms of medical treatments is still regarded as infinite.
HeLa cells quickly entered the medical catalogues and are still routinely in demand – at a price – by any researcher who has some human biology project in hand. The US firm, Thermo Fisher Scientific, for example, lists HeLa cells as Catalogue Number R71407. Cost per sample? Typically several hundreds of dollars, to several thousands, depending on whether they have been modified for specific research purposes.
Over the years, curiosity grew. Who was the patient HeLa? Up until the 1970s, no-one was sure. Patient confidentiality made the hospital reluctant to release her name, but the woman at the heart of it was eventually confirmed to be Henrietta Lacks, a black woman aged 31, mother of five, born in 1920 in a rural segregated community in tobacco-growing Virginia, where the family had once been slaves.
Following the diagnosis of cervical cancer, Henrietta had been treated in Johns Hopkins with a crude early form of radiation treatment, the only treatment then available. Like most of the indigent black population treated at that hospital, she had no health insurance, and patients in public wards were often used for research, usually without their knowledge. Many doctors and scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. Henrietta had no knowledge that tissues had been taken from her cervix and sent off for research purposes.
Over the decades, the Lacks family, still living in a rural, largely racist community, knew nothing of the cells of their mother being distributed all over the world in what had become a multi-billion dollar industry. When she was finally identified, scientists, medics and reporters swooped down on the bewildered family members, who were totally ignorant of science matters. The scientists took intimate samples, and told what was to the family a completely incomprehensible story about their mother, somehow still alive, and living in test tubes all over the world. It seemed to them like a supernatural horror story, tinged with blasphemy or voodoo.
They resented the prying eyes on their medical and family history. They were being told their mother was hugely important in medicine, but they were too poor to afford healthcare. They felt deceived, exploited and patronised, surrounded by explanations and requests they could not understand from people they did not trust. They withdrew from outside communications for many years. Oprah Winfrey played Deborah, Henrietta's daughter in a 2017 film about the family's experiences.
A legacy of mistrust and suspicion of medical and scientific initiatives still resonates today in black communities from the exposure of many instances of unethical medical research which has been done on black people from the time of slavery. For example, a news account in 1972 exposed the Tuskegee study which began in the early 1930s, whereby black men suffering from syphilis were denied effective treatment but monitored until they died, so that the course of the disease could be studied. Bill Clinton offered a formal Presidential apology in 1997.
So, in addition to all the medical advances, Henrietta's story also contributed to the development of medical ethics. Now, all medics are appraised not only of the need for patient confidentiality, but also of informed consent, and the need to discuss procedures, with reasons and explanations in language the patient can understand.
But the question of property rights remains unresolved. Who owns the rights to the HeLa cells? As her biographer Rebecca Skloot observed: 'It is impossible to calculate how much money has been made in the world of science from the use of HeLa cells, whether it is selling HeLa, or making a product using HeLa'. And the family's lawyer, Christina Bostick observed: 'There are 17,000 US patents that involve HeLa cells which are theoretically continuing to make money'.
Her family benefited little from all the bounty. But a few months ago, in October 2021, on the 70th anniversary of her death, the Lacks family filed a Federal law suit against Thermo Fisher Scientific, claiming unjust enrichment and non-consensual use of Henrietta's cells and tissue samples.
We should wish them well with getting recognition of Henrietta's incredible but unseen contribution to science, and to the good health of all of us who have benefited from the resulting modern medical practices.
Mary Simpson is Professor Emeritus of Classroom Learning at Edinburgh University
For Part 1 of 'Extraordinary women and their legacies' (Rosalind Franklin) click here
For Part 2 of 'Extraordinary women and their legacies' (Lise Meitner) click here