From the development of the polio vaccine to leukemia research, the cells from one poor Black woman named Henrietta Lacks was responsible for it all. These cells have become one of the most important discoveries in biomedical science, as the immortal nature of these cells allowed for many medical breakthroughs as well nearly 11,000 patents. While there’s no doubt that these cells are crucial for biomedical research, the story of how these cells came to be isn’t so simple. In fact, Lacks never consented to her cells being collected and used, and while pharmaceutical companies have profited millions of dollars from her cells, her family had no knowledge of the cells and are currently battling for fair compensation.
Early Life of Henrietta Lacks
Henrietta Lacks was born as Loretta Pleasant on August 1st, 1920 in Roanoke, Virginia from a poor, African-American family. When Henrietta’s mother, Eliza Pleasant, died during childbirth when Henrietta was four years old, her father, John Randall Pleasant, moved their family of ten children to Clover, Virginia where the rest of her family had worked as slaves.
She worked as a tobacco farmer, and soon married her cousin, named David “Day” Lacks, whom she lived with when she lived on her grandfather’s farm. She had five children, Lawrence, Elsie, Sonny, Deborah, and Zakariyya Lacks, who described their mother as a strong but caring woman. In particular, she loved cooking and dancing with her children, and she liked to dress stylishly.
Yet, in 1951, at just 30 years old, Henrietta was diagnosed with a particularly aggressive form of cervical cancer after she noticed bleeding and a lump on her cervix after her fifth pregnancy likely due to the human papillomavirus (HPV). During that time, few hospitals would admit Black patients, so Henrietta was referred to the Johns Hopkins Hospital in Baltimore, which was one of the only hospitals to treat poor African American patients.
When doctors discovered a particularly aggressive and malignant tumor on her cervix and diagnosed her with cervical adenocarcinoma, they treated her with radium treatments. This procedure involved stitching canvas bags with glass tubes of radium inside, called Brack plaques, which was the standard of care during the time.
However, during this treatment, the doctors took two dime-sizes samples of her tissues from her cervix and from the tumor, even though Henrietta had not been informed or asked for her consent. But while not asking for consent may seem unacceptable today, at the time, at the time, it was the norm for doctors to take tissue samples from patients without their consent.
“I didn’t sign no papers. I just told them they could do a topsy. Nothing else, them doctors never said nuthin’ about keeping her alive in no tubes or growin’ no cells. All they told me was they wanted to do a topsy to see if they could help my children.”David “Day” Lacks, The Immortal Life of Henrietta Lacks
The beginning of HeLa cells
Henrietta’s samples were taken to Dr. George Gey, a prominent cell biologist and the head of tissue culture research at Johns Hopkins University. For years, scientists have been trying to grow human cells in culture to study, but these cells would quickly die.
Normal cells die after around 40 to 50 divides in a process called apoptosis to prevent mutations from accumulating. However, cancer cells can ignore those signals and can continue dividing indefinitely, but still, these cells would often die in the laboratory.
But not Henrietta’s cells. When the cancer cells from Henrietta Lacks were grown in the laboratory, the scientists were shocked by the cells’ ability to divide indefinitely with an incredible intensity. Dr. Gey’s wife Margaret, a nurse and his research assistant, described the cells as “spreading like crabgrass!”
These cells were labeled “HeLa,” from the first two letters of Henrietta’s first and last name. This was a revolutionary discovery, which many scientists began asking Dr. George Gey for samples of the cells. But while Henrietta’s cells continued to grow vivaciously in the laboratory, the radium treatment did not cure the cancer cells and the cancer began metastasizing in Henrietta’s body, and she became weaker and weaker. On October 4th, 1951, Henrietta Lacks died of cervical cancer, at just 31 years old. Her children, some of which were still infants or young children, were without their mother.
The HeLa cells were shipped worldwide and mass-produced…
With the beginning of the first immortal human cell line, Dr. Gey generously shipped the cells to laboratories worldwide, as he believed that it was his duty to share his discovery with the scientific community.
But what made these cells so special? Normally, when cells divide, the telomeres on the end of the chromosome get depleted, which prevent them from dividing indefinitely. However, with HeLa cells, the enzyme telomerase continues to rebuild the telomeres indefinitely, which allows for the cells to divide forever. These mutations are due to the cancerous nature of the HeLa cells; while Henrietta’s healthy cells died shortly after being grown in the laboratory, HeLa cells contain around 76 to 80 chromosomes, while normal cells only contain 46 chromosomes.
In addition to this, HeLa cells are capable of growing unusually fast, as the cells were found to double in 24 hours. This means that HeLa cells have an exceptional ability to contaminate any cell line they come in contact with, and the implications of this are huge, as thousands of studies may be wrong due to contaminated cell lines. In fact, it is estimated by Christopher Korch, a geneticist at the University of Colorado that, “nearly 5,800 articles in 1,182 journals may have confused HeLa for HEp-2; another 1,336 articles in 271 journals may have mixed up HeLa with INT 407.”
To ship the sample of the cells worldwide, Dr. Gey carefully packaged the cells with ice to maintain the temperature during shipping. This became the first living cells to be shipped with postal mail.
By 1952, the first factory for the mass production of HeLa cells was established at the Tuskegee Institute, which was a nonprofit with many Black and female workers to help supply the cells to researchers and laboratories. Soon, this facility was churning out six trillion cells per week, while another company, Microbiological Associates, began selling these cells for a profit.
While many people accuse Dr. Gey of pocketing the profits from HeLa cells, it’s very unlikely that he made any money from those cells himself since he never patented the HeLa cells or the cylindrical roller drum he invented to grow cells in the laboratory, while Johns Hopkins University denies that they have ever sold the cells. In fact, Dr. Gey had given away so many of the cells that he lost control over how the cells were cultured and used.
Nevertheless, for many medical supply companies, HeLa cells have generated an incalculable profit, as today, these cells can be found anywhere from $250 to thousands of dollars per vial. It is estimated that if all of the HeLa cells ever grown were combined on a scale, they would reach 50 million metric tons.
“Johns Hopkins Medicine sincerely acknowledges the contribution to advances in biomedical research made possible by Henrietta Lacks and HeLa cells. It’s important to note that at the time the cells were taken from Mrs. Lacks’ tissue, the practice of obtaining informed consent from cell or tissue donors was essentially unknown among academic medical centers. Sixty years ago, there was no established practice of seeking permission to take tissue for scientific research purposes. The laboratory that received Mrs. Lacks’s cells had arranged many years earlier to obtain such cells from any patient diagnosed with cervical cancer as a way to learn more about a serious disease that took the lives of so many. Johns Hopkins never patented HeLa cells, nor did it sell them commercially or benefit in a direct financial way. Today, Johns Hopkins and other research-based medical centers consistently obtain consent from those asked to donate tissue or cells for scientific research.”Statement released in February 2010 from Johns Hopkins
Important discoveries in medical research that were made possible by HeLa cells
Yet, despite the ethical dilemmas with HeLa cells, it’s undeniable that these cells are critical to medical research. In fact, one of the first treatments developed using HeLa cells was the polio vaccine, developed by American virologist Jonas Salk. In the 1950s, the polio epidemic was at its peak in the United States, as in 1952 alone, around 60,000 children were infected with polio, paralyzing thousands. While the vaccine was originally tested using Rhesus monkey cells, this was an expensive process as testing the poliovirus would kill the cell, and since the extraction process for the cells would kill the monkey, this meant that using monkey cells were too expensive to use at a large scale.
However, because the HeLa cells were found to be susceptible to the poliovirus, the polio vaccine could be tested using these cells. This vaccine was later tested on 1.8 million children, and today, polio has nearly been eradicated globally, which may not have been possible without HeLa cells.
The discoveries don’t end there. In the mid-1960s, HeLa cells were used to map the human genome as they were fused to mouse cells, becoming the first human-animal hybrid cells. In this project, researchers had to figure out which human gene produced each protein since the cells had an assortment of human and mouse genes. Years later, the Human Genome Project, an international research effort to decode the human genome, used similar techniques to sequence the entire human genome allowing scientists to identify genes involved in genetic diseases.
In addition, HeLa cells were used to develop a vaccine against the human papillomavirus (HPV), which was the virus that had caused Henrietta Lacks’ cervical cancer and killed her. This is because the HPV virus inserts its own DNA into normal cells, causing the cells to become genetically unstable and accumulate mutations, allowing the cells to ignore immune responses that control cell growth.
When German virologist Harald zur Hausen discovered that HeLa cells contained multiple copies of the HPV-18 virus, scientists used this information to develop vaccines against the HPV virus. While the HPV virus doesn’t always cause cervical cancer, nearly everyone who gets cervical cancer has the HPV infection, so today, by preventing the HPV infection in the first place, the HPV vaccine has reduced HPV cases in teenage girls by nearly ⅔. HeLa cells have played a huge role in cancer research, as these cells helped develop chemotherapy, test for cancerous cells in a cell line, study leukemia, and more. With HeLa cells, scientists were able to discover that the drug, Camptothecin, was able to slow the growth of cancer cells, and today, this drug is used to treat certain ovarian, lung, and cervical cancers.
HeLa cells were sent to space even before astronaut Yuri Gagarin!
In the 1960s, HeLa cells were sent into space on the Soviet satellite, Korabl-Sputnik, to observe the effects of zero gravity on human cells. It was found that the cells divided even faster in zero gravity, which was unlike noncancerous cells that grew normally in zero gravity. This information was crucial for future space exploration and the possibility of colonizing outer space.
But these cells weren’t just sent to space – they were also sent under the sea to research the effects of deep sea pressure, and used to safely test cosmetics, study aging, advance the development of in-vitro fertilization, cloning, and many more. In fact, there have been more than 17,000 patents and 110,000 publications involving HeLa cells.
“She was worried that research on these cells would hurt her mother in the afterlife. She’d say things like, ‘Can she rest in peace if you are shooting bits of her off to the moon?'”Rebecca Skloot on Deborah Lacks, The Immortal Life of Henrietta Lacks
But while the scientific community greatly benefited from HeLa cells, the Lacks family was struggling
Yet, while the scientific community greatly benefitted from the HeLa cells, the Lacks family was not fairly compensated. After Henrietta’s death, her children struggled with the loss of their mother. In fact, Henrietta’s second child, Elsie, was developmentally disabled and died at 15 at the Hospital for the Negro Insane after being subjected to neglectful care at the hospital.
For the Lacks family, while the HeLa cells had generated an incalculable profit for medical supply companies, members of the family struggled to afford their prescriptions as they did not have health insurance due to poverty. Due to the ability of HeLa cells to infect other cell cultures, scientists had lost track of which cells were contaminated by HeLa cells, so to reestablish the cell lines by finding markers that could be used to identify HeLa cells, a scientist from Johns Hopkins University called the Lacks family to ask for blood samples.
However, according to Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, when the scientist called, “What Henrietta’s husband heard was that his wife was still alive and they had her in a cell… The only kind of cell he knew was a jail cell.” This was the first time that the Lacks family had heard of HeLa cells, as they were never informed about the biopsy that had led to the discovery of HeLa cells.
Due to the severe distrust of medical researchers and reporters from years of being taken advantage of, Deborah Lacks, Henrietta’s daughter, finally agreed to meet with science author Rebecca Skloot after Skloot had tried for a year to get in contact with her. This began the journey that would bring the story and struggles of the Lacks family into light.
Deborah Lacks, who was an infant when Henrietta died, was desperate to find out about her mother’s story, and simple questions that she never got to ask her mother, such as what Henrietta’s favorite color was. With the publication of Skloot’s book, The Immortal Life of Henrietta Lacks, that took 13 years of research alongside Deborah Lacks, this brought up important issues on racism and how the doctors’ actions had impacted the Lacks family decades later, as the family had not been financially compensated for the cells.
“Everything we know about our grandmother came from the book [The Immortal Life of Henrietta Lacks]… We have a better sense of who she was as a person, as a mom, as a wife. They say she loved to wear red nail polish, that she never left the house without a neatly pleated skirt, loved to cook, had hazel eyes, a small waist, size 6 shoes. It’s a great honor to know our grandmother as a person rather than just as HeLa cells.”Jeri Lacks-Whye, Henrietta Lacks’ granddaughter
HeLa cells have brought up many bioethical concerns in tissue research
In the 1950s and even today, informed consent was not a regular practice and doctors often took tissue samples from patients without their knowledge. In fact, the phrase “informed consent” only first appeared in 1957, which was six years after the cells were taken from Henrietta Lacks. Today, federal laws require informed consent on tissue samples specifically for research that have the donor’s name attached, but anonymized samples that were taken from a routine procedure don’t require consent from the donor to be used for research.
While de-identification is often used to protect the privacy of donors, the naming of the cells using Henrietta’s first and last name meant that she could be identified and have her information leaked. By naming the cells in a way that could easily be identified, this violated the privacy of the Lacks family.
When the media began identifying the family behind these cells, the pseudonyms “Helen Lane” and “Helen Larson” were made up to throw the media off-track, which is why these names may often be used when describing HeLa cells. However, while Dr. George Gey was careful to keep Henrietta’s name private, he finally agreed to release her name to the public in the 1970s right before his death.
When the genome sequence of HeLa cells was published, this caused a huge bioethics storm
In 2013, scientists in Germany sequenced HeLa cells without the consent of the Lacks family, causing a huge bioethics controversy as many claimed that this violated the privacy of the Lacks family, since this disclosed the genetic diseases that surviving family members may have inherited.
Because of this, the National Institutes of Health (NIH) later reached an agreement with the Lacks family stating that a board called the HeLa Genome Data Access containing members of the Lacks family could review and approve applications for use of the HeLa whole genome data.
With wider recognition of the Lacks family and the importance of ethics in tissue research, many Lacks family members have spoken at popular events, as they have appeared in hundreds of speaking events. These opportunities allow scientists to interact with family members to better understand how bioethics and privacy affects family members, and the Lacks family has also been able to make an income through speaking fees.
“We were surprised, we did not expect this to happen at all…We wanted to respect the wishes of the family, and we didn’t intend to cause them any anxiety by the publication of our research.”Lars Steinmetz, scientist that published the genome of HeLa cells
But with this wider recognition, this began a feud within the Lacks family
With the success of The Immortal Life of Henrietta Lacks, television company HBO produced a film adaptation of the book which was released in 2017.
However, a feud began growing, dividing the Lacks family, as two family members, Lawrence Lacks, Henrietta’s oldest child, and Ron Lacks, his son, began to contest the agreements regarding HeLa cells that had been made with HBO, NIH, Johns Hopkins, and other family members.
They disagreed with the portrayal of the family in the HBO film and stated that they had not been consulted for the making of the film, even though HBO had previously offered and they had refused. They also stated that they had renewed interest in taking legal action against Johns Hopkins to gain compensation for the use of HeLa cells, and refused the NIH agreement about the use of the genomic data of HeLa cells in 2013 because they stated that the contract was not valid without the participation of Lawrence Lacks, who is the living executor of Henrietta’s estate.
In total, according to Steve Hendrix from the Washington Post, “[Lawrence and Ron Lacks] demanded that the Henrietta Lacks Foundation, established and largely funded by Skloot, be transferred to their control; that HBO and Winfrey’s Harpo Films donate $10 million each to a new foundation started in Lawrence’s name, and that a speakers’ agency stop booking other family members for appearances without Lawrence’s approval. They urged NIH to let Lawrence decide which Lacks family members would serve on the HeLa advisory group and to suspend all research funding to Johns Hopkins. They asked Penguin Random House for an advance to write their own book.”
This feud has begun tearing the once close-knit family apart. Using DNA tests, Lawrence and Ron claimed that Veronica Spencer and her sister are not biologically-related to Henrietta Lacks, and therefore not part of the family. Growing up, Veronica Spencer was close to her uncle and granduncle, whom she called “Pop-pop,” so their allegations were incredibly painful to her. Currently, Dr. Gonçalo Abecasis at the University of Michigan is working on reconstructing the pedigree of the Lacks family using the DNA samples from HeLa cells and living relatives.
But what were Dr. George Gey’s true intentions with the HeLa cells?
While some may deem Dr. George Gey’s actions as unethical, it’s important to make clear that Dr. Gey did not have malice intent when discovering and establishing the HeLa cell line. Dr. Gey was dedicated to his research in cancer, and he often took cells from himself and his kids.
In fact, when Dr. Gey was diagnosed with pancreatic cancer likely due to his work with radium treatments, he wanted the doctors to collect his cancer cells and establish them as the “GeGe” cell line. Unfortunately for him, this never happened, and he soon died of metastatic pancreatic cancer on November 8th, 1970.
Throughout his life, he lived a very modest lifestyle and could barely afford the payments on his house, even though his discoveries in medical research could’ve likely made him a millionaire if he had patented them. Since HeLa cells were never patented, it’s difficult to determine who is truly responsible for paying the reparations as Johns Hopkins maintains that they have never profited from the cells.
“Truth be told, I cannot get mad at science, because it helps people live, and I’d be a mess without it. But I won’t lie. I would like some health insurance so I don’t got to pay all that money every month for drugs my mother’s cells probably helped make.”Deborah Lacks, Henrietta Lacks’ daughter
Henrietta Lacks is often known for the first immortal human cell line, HeLa cells, but more than that, she was beautiful and a caring mother to five children who enjoyed dancing, cooking, and dressing fashionably.
With the discovery of HeLa cells, this has sparked many crucial innovations in medical research, including chemotherapy, the HPV vaccine, and the polio vaccine. Nearly every person alive today has benefited from HeLa cells in some way, as they have contributed to some of the most important discoveries in modern medicine.
Yet, because the doctors never asked for consent to collect the cells, Henrietta and her family were never informed about these cells until 20 years after Henrietta’s death. Today, the Lacks family has been continuing their fight for fair compensation, but this has unfortunately created a divide between family members regarding who has the rights to the cells.
While the NIH and other organizations have begun to make amendments, the fight for fair representation and ethics in research continues.
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** This book by Rebecca Skloot is the book that brought the struggles and humanity behind HeLa cells into light!**
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