The Immortal Woman Whose Death Changed the World

Over the past 70 years one woman has contributed to countless major medical and biological breakthroughs, advancing our understanding of cancer, haemophilia, and Parkinson’s disease; unlocking the secrets of human ageing; and helping to develop vaccines for polio, measles, mumps, and HPV. She has travelled the globe, rocketed into space, and stood in the path of nuclear bombs – and all this despite being dead for more than half a century. For while the real Henrietta Lacks died in 1951, a part of her still survives to this day: a line of rather interesting cells, cut from the tumour that killed her, which have continued to divide unabated for decades, outgrowing Henrietta’s original body by a factor of millions. This is the strange and fascinating story of HeLa, the world’s first immortal human cell line.

Henrietta Lacks was born Loretta Pleasant on August 1, 1920 in Roanoke, Virginia, the daughter of tobacco sharecroppers Johnny Pleasant and Eliza Lacks. When Eliza died in childbirth in 1924 Johnny moved the family to the town of Clover, where they lived in a former plantation slave cabin known as the “home-house.” Life for the Lackses was typical of black sharecroppers in the area, Henrietta only completing the sixth grade before working full-time at the family’s tobacco farm. During the week every family member worked sunrise to sunset picking and drying tobacco leaves, while on the weekends they trucked their harvest to the auction house in town to sell it to buyers from the large tobacco companies. Yet despite this hard life her children remember Henrietta as energetic and upbeat, the loving nucleus of a tight-knit clan. She loved to dress up in her best clothes, to dance, and to cook, always keeping her door open in case passing friends and family stopped by for dinner.

In 1934, the 14-year-old Henrietta became pregnant by her cousin Daniel or “Day” Lacks, with whom she shared a bedroom, and gave birth to her first child, Lawrence. Lawrence was followed four years later by a daughter, Elsie. Unknown to Henrietta, Day suffered from syphilis which had passed on to their daughter, causing developmental delays and epilepsy. Elsie Lacks would eventually be diagnosed with “idiocy” and committed to the Crownsville Hospital for the Negro Insane, where she died in 1963 at the age of 15. As for Henrietta and Day, they were married on April 10, 1941, shortly before America entered the Second World War.

The War should have been a boon for the Lackses, as the US Government began sending millions of cigarettes to its soldiers overseas to keep up morale. But in the end this policy only served to benefit large industrial farms, leaving small family operations like the Lackses’ in the dust. At the suggestion of a cousin, Henrietta and Day moved to Turner Station, Maryland so Day could work at the Bethlehem Steel plant at Sparrows Point. The work at Sparrows Point was steady and paid well, but exposed workers to dangerous toxins like asbestos, leading to high rates of lung cancer in the post-war years. While living in Maryland Henrietta would give birth to three more children: David or “Sonny” in 1947, Deborah in 1949, and Joseph in 1950.

But sometime in early 1950, Henrietta began to realize something was seriously wrong inside her body. She complained to her family of feeling a “knot” in her womb, and began suffering frequent and heavy bouts vaginal bleeding. Afraid that doctors would order a hysterectomy and prevent her from having more children, Henrietta waited over a year to seek medical help. At first her doctor suspected syphilis, but when the tests came back negative he sent her to Johns Hopkins Hospital in Baltimore, the only major medical centre in the area that accepted black patients. Henrietta travelled to Johns Hopkins on September 19, 1950, where she was examined by gynaecologist Howard Jones. What he found was unlike anything he had ever seen: the tumour clinging to Henrietta’s cervix, around two centimetres in diameter, was shiny and dark purple in colour – like “grape jello” as Jones put it – and bled at the slightest touch. Following standard procedure, Jones and research assistant Mary Kubicek collected biopsy samples of the tumour and sent them to the lab for analysis. He then scheduled Henrietta for a follow-up appointment in six months’ time.

While most of Henrietta’s biopsy samples were used for diagnostic purposes, a few made their way to the basement laboratory of biologist George Gey. For the past decade, Gey and his wife and assistant Margaret had been tirelessly searching for one of the holy grails of medical research: a human cell culture that could be easily and consistently grown in the laboratory. Such a culture would revolutionize medicine, freeing researchers from the expense, labour, and ethical pitfalls of using animals or live human subjects, as well as providing a single cell line with which experiments could be repeated anywhere with. To this end, Gey voraciously snapped up every tissue sample he could get his hands on, one colleague to describing him as:

“…the world’s foremost vulture, feeding on human specimens almost constantly.”

 But despite his efforts Gey’s quest stubbornly refused to bear fruit. Most of the human cell cultures he incubated died immediately; some held on for a few days or weeks, but inevitably all of them stopped dividing and wasted away. Thus, when Henrietta Lacks’ tumour biopsies arrived in the lab, little was expected of them. As with the dozens of other candidate cells that arrived daily, the samples were divided up, placed in vials of nutrient-rich growth medium, and placed in an incubator – where Gey fully expected then to die off just like the others.

Six months later, on February 5, 1951, Henrietta Lacks returned to Johns Hopkins, where she received the diagnosis she had been dreading: Epidermoid Carcinoma of the Cervix, Stage 1. She was sent to surgeon Dr. Lawrence Wharton Jr, who immediately began treatment via brachytherapy. This involved sewing tiny metal capsules of Radium into Henrietta’s cervix, allowing the powerful radiation to directly bombard the tumour. Henrietta’s cancer appeared to respond well to the treatment; when she returned for a follow-up several months later the strange “grape jello” tumour had all but disappeared.

Meanwhile, down in George Gey’s laboratory, something extraordinary was happening. Against all odds, Henrietta’s cells were not only surviving; they were thriving. While other human cell cultures had barely limped along, managing fewer than 50 cell divisions before dying off, Henrietta’s cells were doubling every 24 hours and showed no signs of stopping. And whereas other cells could only grow on the top surface of the culture medium, Henrietta’s cells had no such limitations, growing unstoppably until they filled the culture vials top-to-bottom. They were, in the words of Margaret Gey, “spreading like crabgrass.” After a decade of dogged work, the Geys had finally achieved a major breakthrough: the first immortal human cell culture capable of being grown in vitro. Using the first two letters of their donor’s first and last name, they dubbed their new discovery HeLa.

But while the HeLa cells multiplied vigorously in their incubator, their namesake took a turn for the worse. Despite her tumour having apparently disappeared, within months of completing her Radium treatment Henrietta began suffering from intense pain all over her body. On August 8 she returned to Johns Hopkins, where she soon received the devastating news: her original cervical cancer had metastasized, scattering hundreds of tumours all over her body. So widespread was these tumours that the pathologist who performed her autopsy would describe her body as being filled with white pearls. Doctors immediately began intensive treatment using X-rays, but it was already too late. Half-conscious and delirious, Henrietta Lacks died at Johns Hopkins at 12:15 AM on October 4, 1951. She was buried in an unmarked grave near the “Home-House” back in Clover.

But just like HeLa itself, the demand for the remarkable cells kept growing – and growing. In 1952, in order to share his breakthrough with the scientific community, George Gey established a HeLa factory at the Tuskegee Institute in Alabama. Within a year, the factory’s 35 staff were churning out 20,000 vials or around 6 trillion cells every week. For a mere $10 plus freight costs any researcher in the country could order a vial of HeLa and have it shipped to them within 24 hours. Gey ran the Tuskegee factory as a non-profit for the benefit of medical science, but as he never patented the cells others were free to exploit HeLa for commercial gain. In 1953, Samuel Reader and Monroe Vincent of the biotech firm Microbiological Associates established a rival for-profit HeLa plant in an abandoned Fritos potato chip factory in Bethesda Maryland, and soon began filling orders from large institutions like the National Institutes of Health. The factory’s production soon outstripped Tuskegee’s, eventually putting them out of business.

Researchers had every reason to be excited about HeLa, which quickly proved itself an invaluable scientific tool. HeLa’s first major success was the development of the Salk Polio vaccine. Previously Polio had been studied using monkeys, a slow and labour-intensive process, but the ability to directly infect human cells in vitro allowed for the rapid development of a safe, effective vaccine which first entered use in 1955. HeLa would later be used to develop vaccines for dozens of other human viruses including herpes, measles, mumps, and the livestock diseases fowl pox and equine encephalitis. They were also sent into space aboard satellites and exposed to nuclear blasts to study the effects of radiation on human cells.

In 1953, geneticists at the University of Texas used HeLa to determine that human cells have 46 chromosomes, while in the 1960s HeLa cells allowed American geneticist Leonard Hayflick to unlock the secrets of their own extraordinary immortality. Hayflick discovered that the ends of chromosomes are capped by lengths of DNA known as telomeres. Every time a cell divides the telomeres get shorter and shorter, until eventually they disappear altogether, causing the chromosomes to unravel and the cell to die. Consequently, normal cells are only able to divide a finite number of times before dying – a number now known as the Hayflick Limit. However, HeLa cells produce an enzyme known as telomerase which continuously rebuilds the telomeres, allowing the cells to continue dividing indefinitely. This insight not only shed light on the mystery of HeLa, but kicked off a new era of research into the process of carcinogenesis and the mechanisms of human ageing.

But as HeLa cells took the biomedical community by storm, the woman they had come from quietly slipped into obscurity, with even her name being all but forgotten. A November 2, 1953 article in the Minneapolis Star referred to her as “Henrietta Lakes,” while a May 14, 1954 Colliers article further distorted this to “Helen Lane” – the name that would be associated with the story for the next 20 years. And while biotech companies like Microbiological Associates made millions every year from Henrietta’s cells, her family never received a dime of the profits and continued to live in poverty. It was yet another chapter in the long and tragic history of African-Americans being exploited by the medical establishment – a history that includes the infamous Tuskegee Syphilis Experiment of 1932, in which African-American men were unknowingly infected with syphilis and left untreated for nearly four decades to study the progression of the disease. Following the 1946 Nuremberg Trials which exposed the shocking human medical experiments performed by Nazi, the medical community in most Western nations adopted the Nuremberg Code, which forbids human experimentation without obtaining informed consent from the participants. But as the Code was only a guideline and not law, unethical experiments still continued, and one of the worst directly involved HeLa.

Starting in 1954, immunologist Dr. Chester Southam of the Sloan-Kettering Institute at Cornell began injecting research subjects with HeLa cells to determine whether cancer was contagious and whether the immune system could fight off the infection. The some 600 subjects he injected included terminal cancer patients under his care and inmates from the Ohio State Penitentiary – none of whom were able give informed consent. In the majority of cases the injections produced only small benign tumours which were safely removed, but in 4 patients the cancer metastasized, with one dying after it spread to her lymph nodes.

In any event, Southam’s experiments continued until 1963, when Emmanuel Mendel of the Jewish Chronic Disease Hospital in Brooklyn finally blew the whistle. The affair caused a public uproar, with lawyer William Hyman denouncing Southam’s experiments as “Illegal, immoral, and deplorable.” Yet despite the New York Board of Regents finding Southam guilty of fraud, deceit, and unprofessional conduct, they only suspended his medical license for a year – a sentence later reduced to one year’s probation. It would not be until the 1970s that Informed Consent became legally enforceable in the United States.

Not that these laws would have helped the Lacks family. In the 1950s biopsy samples, extracted organs and other tissues were considered medical waste and not the patient’s property, and thus free for hospitals to experiment with as they pleased without informing the patient. This was especially true at hospitals like Johns Hopkins which provided free medical care to the poor, the free use of patients’ tissues being considered fair payment for medical services rendered. The issue of patients’ ownership over their own tissues finally came to a head in the 1990 Supreme Court of California case Moore v Regents of the University of California, in which leukaemia patient John Moore sued physician David Golde of the UCLA Medical Centre for developing and commercializing an immortal cell line based on his own cancer cells. In a landmark decision, the court ruled that discarded tissues were not in fact a patient’s property and could be freely commercialized. The decision was made out of fear that granting patients ownership over discarded tissue would interfere with medical research, as medical laboratories could not reasonably be expected to verify the source and ownership of every piece of tissue. However, the ruling also included a caveat requiring doctors and researchers to  first obtain consent from patients and explain how their extracted tissues will be used. But given that Henrietta’s tissues were collected long before this ruling, the issue of ownership has yet to be resolved and the Lacks family has still received no compensation for the use and commercialization of HeLa.

Meanwhile, another crisis was brewing in the medical community, one that threatened to bring the flood of new discoveries unleashed by HeLa to a grinding halt. By the mid-1960s dozens of immortal cell lines had joined HeLa in the arsenal of medical research, bearing donor-derived names such as A-Fi and Di-Re. These lines had opened an unprecedented window into carcinogenesis, allowing researchers to pinpoint the exact moment a cell changed from normal to cancerous, a process dubbed spontaneous transformation. Researchers in Russia even claimed to have discovered a virus that caused cancer, bringing the possibility of a universal cure tantalizingly within reach. Then, in September 1966, molecular biologist Stanley Gartler of the American Type Culture Collection Committee stood  before the Second Decennial Review Conference on Cell Tissue and Organ Culture in Bedford Pennsylvania and dropped a massive bombshell. While conducting an audit of immortal cell lines, Gartler discovered that despite being of supposedly separate origins, all 18 lines he examined contained the same mutation of a gene called G6PD found almost exclusively in people of African-American descent. To his shock, Gartler realized these weren’t new cell lines at all; they were all HeLa. Alarmed, Gartler tested more and more cell lines, but in every case he found only HeLa. The conclusion was disturbing but inescapable: there were no other immortal cell lines. There was only HeLa. So vigorous were Henrietta Lacks’s cells that if even one made its way into a cell culture it would out-divide and replace the original cells overnight. Like a virus HeLa had hopped from laboratory to laboratory and culture to culture, invading and conquering until there was nothing else left.

Every jaw in the conference hall must have dropped at once, for at a stroke Gartler had shattered over a decade of scientific progress – and with it countless hopes, dreams, and careers. All other commercial human cell lines were now worthless. There was no spontaneous transformation or cancer virus; the cultures had simply been contaminated with HeLa. Hopes of understanding carcinogenesis and developing a universal cure quickly faded away. Eventually new authentic human cell lines would be discovered, including A549 in 1972 and HEK 293 in 1973, but never gain at the same feverish pace as the “golden years” of 1951-1966.

The 1970s brought a further positive development as, after laying buried and forgotten for nearly two decades, the true story of Henrietta Lacks finally resurfaced. On March 25, 1976, Rolling Stone published The Double-Edged Helix by reporter Michael Rogers, the first accurate account of the origins of HeLa and the first to reveal Henrietta’s actual name. This was followed by A Conspiracy of Cells by Michael Gold in a 1985 issue of Science, which was based on Henrietta’s actual medical records obtained from Johns Hopkins. But with this newfound publicity came renewed interest from the medical community, and researchers from Johns Hopkins soon began tracking down members of the Lacks family and collecting blood samples, never once explaining what the tests were for. Little changed for the Lacks family until 2013, when researchers succeeded in sequencing the genome of HeLa cells. Science writer Rebecca Skloot, who had worked closely with the Lackses while writing her bestselling 2010 book The Immortal Life of Henrietta Lacks, informed the family of this development, raising concerns over their medical privacy should the sequence be made publicly available. Later that year, the National Institutes of Health signed an agreement with the Lacks family granting them control over public disclosure of the sequence and ensuring they receive credit in any scientific paper published about the genome. In 2010 Skloot also established the Henrietta Lacks Foundation to provide assistance to marginalized individuals and families impacted by unethical medical research. The foundation has received millions in donations from private individuals and institutions – including an undisclosed six-figure gift from the Howard Hughes Medical Institute in October of that year.

70 years on Henrietta’s remarkable cells are still one of the most popular human cell lines in medical research, with an estimated 50 million tons stored in laboratory freezers around the world. If laid end-to-end, they would circle the globe three times. And so long as they are kept properly fed and incubated they will continue to divide and thrive for decades to come, outliving their original host by a century or more. While the story of Henrietta Lacks is one of arguably questionable ethics, it is also one of hope and discovery, with the breakthroughs made using HeLa cells helping to save countless lives every year – a fact, her family says, that would have made Henrietta smile.

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