Content warning: This article describes violations of a Black woman patient’s bodily autonomy.
In Rebecca Skloot’s The Immortal Life of Henrietta Lacks, Deborah Lacks was quoted as saying:
“My mother name was Henrietta Lacks, she died in 1951, John Hopkins took her cells and [those] cells are still livin today, still multiplyin… Science calls her HeLa and she’s all over the world in medical facilities… I always say my mother was HeLa… her cells helped make my blood pressure medicines and antidepression pills.”
“If our mother cells done so much for medicine, how come her family can’t afford to see no doctors? People got rich off my mother without us even knowin about them takin her cells.”
When Johns Hopkins Hospital stole Henrietta’s cells
On January 29, 1951, a 31-year-old African American woman called Henrietta Lacks went to the gynecology clinic at Johns Hopkins Hospital — whose public wards admitted Black patients — complaining of a “knot in her womb” and vaginal bleeding. Upon examination, Dr. Howard Jones — the gynecologist on duty — found a lump the size of a nickel. A few days later, Jones received Henrietta’s biopsy results from pathology, which had diagnosed the lump as stage 1 cervical carcinoma, a type of cancer that begins in the surface, epithelial tissues that line the cervix.
When Henrietta showed up at Hopkins, Jones and his boss, Dr. Richard Wesley TeLinde — one of the top cervical cancer experts in the US at the time — had been publicly debating how to diagnose and treat cervical cancers.
Cervical carcinomas are categorized into invasive carcinomas — which have penetrated the surface of the cervix — and noninvasive carcinomas — which remain superficial. In 1951, most doctors believed that invasive carcinomas were fatal and required aggressive treatment, while noninvasive carcinomas couldn’t spread so they wouldn’t require aggressive treatment. TeLinde and Jones believed that noninvasive carcinomas were just an earlier stage of invasive carcinomas, and found in a study that 62 per cent of women with invasive carcinomas had previously had noninvasive carcinomas.
TeLinde believed that if he could culture tissue from both types of carcinomas and prove they looked and behaved similarly in the lab, he could disprove the argument that noninvasive carcinoma is not deadly and that it is the precursor to invasive carcinoma. TeLinde collected or oversaw the collection of samples from any woman who went to Hopkins’ public wards with cervical cancer and sent them to Dr. George Gey, head of tissue culture at John Hopkins, and Margaret Gey, a registered nurse and his wife, who had been trying to grow cells in culture for the past 30 years — a development that would allow them to grow the first immortal cell line.
On February 6, 1951, as Henrietta was unconscious on the operating table, the surgeon on duty, Dr. Lawrence Wharton Jr., extracted two dime-sized sections of tissue from her cervix: one from the healthy cervical tissue and one from her tumour. When Wharton finished treating her tumour, he sent off Henrietta’s cervical tissue to Dr. George Gey, who had been pessimistic that this sample would be any different from the ones they had tried to culture before. But Henrietta’s tumour cells doubled every 24 hours, proliferating into hundreds, thousands, millions — growing 20 times faster than the cells from Henrietta’s normal cervical tissue.
These were later named HeLa, abbreviating Henrietta Lacks’s name.
Using HeLa in research
Henrietta died on October 4, 1951. By the end of that year, the world was in the middle of a polio epidemic. In February 1952, Jonas Salk developed the first polio vaccine — but he couldn’t begin administering it to children until he tested it on cultured human cells. A couple of months later, Gey and one of his colleagues, Dr. William Scherer, infected HeLa cells with poliovirus and found that the cells were susceptible to it, which meant HeLa could be used to test Salk’s vaccine. When the National Foundation for Infantile Paralysis — a charity founded by then-US President Franklin Roosevelt, who had been paralyzed by polio — found out about HeLa’s susceptibility to poliovirus, they contacted Scherer to oversee the development of a HeLa Distribution Center. Eventually, 20,000 tubes of HeLa, containing about six trillion cells, were produced every week, all of which came from a single vial Gey had shipped to Scherer.
In the beginning, researchers reserved HeLa cells for polio testing purposes, but the rate at which the HeLa cells were proliferating didn’t indicate any risk of shortage, so the cells were sent to any researcher who bought them to see how human cells behaved in certain environments, how they reacted to specific drugs, etc. Despite their malignancy, HeLa cells still had the same cellular mechanisms as normal human cells: they expressed genes and regulated them, they were susceptible to infections, and they synthesized proteins.
With HeLa cells, researchers had human cells on demand without having to jump through the logistical hoops of waiting for donor cells, providing compensation, running experiments on rodents, or getting the rigorous ethics review and approval that would have otherwise been required for human clinical trials. Researchers had access to inexpensive, live, immortal human cells that allowed for mistakes and risky experiments. This development revolutionized almost every area of human research.
HeLa cells today
As the human cell staple in most labs, the HeLa cell line was used to study human genetics. The HeLa cell line is the reason we know that human cells have 46 chromosomes — the DNA threads inside our cells that contain all our genetic information. Scientists believed that human cells contained 48 chromosomes until a geneticist in Texas mixed the wrong medium with HeLa cells, making the chromosomes inside the HeLa cells swell up, which allowed an accurate count of 46 chromosomes. This served as a reference to define when someone had too many or too few chromosomes, making it possible to diagnose genetic diseases like Turner syndrome, Down syndrome, and Klinefelter syndrome.
The HeLa cell line is used to this day. The study that identified the mode of infection of SARS-CoV-2, the virus that causes COVID-19, in humans used HeLa cells. HeLa cells were not properly infected by SARS-CoV-2, leading to the finding that the disease requires a surface cell molecule called ACE2 to enter the cell. When HeLa cells were engineered to express the ACE2 molecule, SARS-CoV-2 successfully infected the cells.
This finding contributed to the design of COVID-19 vaccines with SARS-CoV-2 particles that interact with ACE2 receptors on human cells, inducing an immune reaction that is similar but milder than that of the real viral infection; this primes the immune system for the real virus.
Recognizing the impact of Henrietta’s cells
Today, due to the HeLa cells, we know so much about cancerous genes, herpes, leukemia, influenza, hemophilia, Parkinson’s disease, sexually transmitted diseases, and human longevity. The HeLa cell line has helped with some of the major advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, genetic mutations, in vitro fertilization, and more. Henrietta’s cells were even taken on the first space missions to help us gauge the effect of zero gravity on human cells.
While HeLa cells indeed have a phenomenal impact on medicine, they have not had the most ethical history, from the cells’ use in research to the media coverage surrounding them. In 1985, reporter Michael Gold wrote about HeLa cells and quoted from Henrietta’s medical records. When Skloot interviewed Gold years later to ask how he had gotten the records, he said he didn’t remember, and when she asked if he had tried speaking to Henrietta’s family before he published the records, he said, “To be honest, the family wasn’t really my focus.”
In the early 2000s, when Skloot had been interviewing Henrietta’s family, Deborah said that she took multiple pills a day, some of which weren’t covered by her or her husband’s health insurance. So not only were Henrietta’s cells stolen, the medical revolution that her cells launched did not even financially benefit her family in a way that even attempts to compensate them for how Henrietta had been violated. The HeLa cell line is one of the most important things that happened to medicine, but this importance has a dishonest ethical foundation.
What does it mean, that one of the most important things that happened to medicine was obtained by unethical means? TeLinde and the Geys had good intentions when they set out to culture Henrietta’s cells; the Geys wanted to develop a human cell line that could function the way it does today and TeLinde wanted to stop unnecessary hysterectomies and allow women with cervical carcinomas the option to get one. But the means by which Wharton, TeLinde, and the Geys acquired Henrietta’s samples are questionable, to say the least. Should results that progress medicine to such an extent as the HeLa cell line has done continue to be used even though they violated Henrietta’s consent?
Some people would argue it would be unethical to use anything found using HeLa cells. Others would say that it would be inappropriate to turn our heads to the research potential of the cell line, especially considering the international scale at which it has helped people and transformed medicine. There is also the argument that using her cells is a way of honouring Henrietta and retelling her story. It’s an ethically sticky situation, but we benefit nonetheless. If you know that you have 46 chromosomes, if you are diagnosed with a genetic disorder, if you’ve had a COVID-19 vaccine, if you’ve ever had a flu vaccine, if you have ever taken any medicine for lactose intolerance, or if you’ve never had polio, you have directly benefited from Henrietta’s cells. We are cushioned with the privilege of benefitting from this dark history, and we have benefitted from the knowledge, the convenience, and the relative ease of research that resulted from racial discrimination in healthcare, from the intrusive means of manipulating Henrietta’s tumor. We will continue to benefit in ways beyond our realization from unethical and racist practices of the past. It’s a burden tagged with a perverse, awkward appreciation.