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Although Henrietta Lacks died 65 years ago, her cells known as the HeLa line, live on, propelling scientific advances around the world. After their discovery, HeLa cells enabled the development of in vitro fertilization, the first clone of a human cell, the development of the polio vaccine, advances in gene mapping, and so much more. However, prior to the publishing of Rebecca Skloot’s The Immortal Life of Henrietta Lacks, few people knew the source of the HeLa cells. Skloot’s book grants a story to the woman who helped change modern medicine, and its impact on her family decades later. But it also brings light to the ethical dilemmas of using a patient’s cells without knowledge or consent, and the role that race played in Lack’s treatment. HeLa’s continued use in medical research and commercial purposes only furthers these concerns regarding medical ethics and privacy and patients’ rights. In this paper, I plan to examine the revolutionary research, ethical questions, and racism wrapped up in one woman’s cancer story.
Henrietta Lacks was an African-American woman ((born Loretta Pleasant; August 1, 1920 – October 4, 1951), who lived in the segregated Baltimore community of Turner station. She was a 31-year-old mother of five when she died of cervical cancer at The Johns Hopkins Hospital on Oct. 4, 1951. According to Dan Ford, vice dean for clinical investigation at the Johns Hopkins school of medicine, although she received state-of-the-art care, she “was diagnosed too late, and the treatment didn’t work.” However, Skloot reveals in her novel that there was more to the story than a simple “late diagnosis.” Skloot explains that while Johns Hopkins was one of the best hospitals in the country, Lacks had to drive “nearly twenty miles to get [to Hopkins], not because [Lacks] preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even it if meant they might die in the parking lot.”
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Skloot does emphasize that we have no way of knowing if Henrietta was subjected to a lower standard of care than a white woman, and in her book, she includes information indicating that every effort was made to relieve Lacks’ pain prior to her death. “According to Howard Jones, [Henrietta’s Doctor], Henrietta got the same care any white patient would have; the biopsy, the radium treatment, and radiation were all standard for the day.” However, Skloot also references “several studies [that] have shown that black patients were treated and hospitalized at later stages of their illnesses than white patients. And once hospitalized, they got fewer pain medications, and had higher mortality rates.” These studies are an important reminder of how race can affect medical treatment and its level of success. Cancers were discovered in their later stages, when they were more difficult to treat, partly because poor black families had less access to adequate medical facilities, and partly because they had very little confidence in the medical community. Skloot provides this context as background for Henrietta’s story, but also to remind us that the era of institutionalized discrimination is far from over. Though we cannot know if Henrietta’s actual treatment at Hopkins was affected by her race, we do know that the legacy of racism still affects African American communities.
Despite the many racial injustices that Lacks’ likely underwent throughout the course of her life, diagnosis, and treatment, the phenomenon of her cells and the subsequent controversy that arose because of them did not begin until after her death. Unbeknownst to Lacks or any members of her family, during her radiation treatments Physician Howard Jones removed two cervical samples from Lacks, one of cancer cells and one of healthy cells. These cells found their way to the lab of cell biologist Dr. George Gey. Due to a mutation, Lacks’ cells were able to survive and reproduce outside of the body. Gey grew the cells continuously in the lab, a feat that had never been achieved before.
Typically, human cells will not survive long once they have been severed from the organism that they belong to. They will divide a maximum of fifty times due to the Hayflick limit , and then die through a process called apoptosis. Gey had hypothesized that he could find the cure for cancer if he found a line of cells that would reproduce infinitely. Unfortunately, up to that point all his cultures had failed. Lacks’ cells, however, just kept dividing.
So, what made Lacks’ cells so special? The answer has to do with mutations in her cells caused by the human papillomavirus (HPV18) that had infected them. HPV inserts its own DNA into that of the host, resulting in a genetic hybrid. While not all cancer has the potential to be an immortal line, Lacks’ mutations possessed at least two characteristics contributing to the immortality of her line. Firstly, HeLa cells divide extremely quickly. According to Gey, even among cancers, HeLa cells multiplied and grew at a much faster than normal rate. What next made HeLa cells special was that they possessed an enzyme called telomerase which is activated during cell division. Normally, it is the gradual depletion of telomeres that stop cells from dividing indefinitely. However, active telomerase rebuilds telomeres cut during division, which in turn allows for indefinite proliferation.
Genetically, HeLa cells contain parts of Henrietta Lacks’ own DNA, mutations introduced by the strain or strains of HPV that infected her, as well as an unnumbered amount of new mutations which were introduced organically through cellular division after the original cells were harvested from her body. Where a normal human cell has 46 chromosomes, a HeLa cell tends to have anywhere between 70 and 90.
The cells have been critical in the development of biomedical science, playing a role in thousands of other patented discoveries. HeLa provides a mode to conduct repeatable experiments on human cells without testing directly on humans, although the cells are arguably no longer human at all. Today, some scientists believe that the HeLa cell line should be considered its own species; “It is a sort of single-cellular organism that reproduces asexually through division and evolves through mutations that compound over time. It is a domesticated species, dependent on humans for food and shelter — the cow of microbial life, perhaps.” https://www.inverse.com/article/31538-henrietta-lacks-immortal-cells-cervical-cancer Regardless of their classification, their unique ability to keep dividing means that HeLa cells can be –and have been—used in investigations across the globe and even in space. According to Ford, today about 80,000 research papers reference HeLa cells.
Still, regardless of their mass contribution to science, and by extension, the world, the continued use of the HeLa line helps sustain a long-debated discussion regarding the ethicality of their existence and use. During her admittance to John Hopkins, the consent formed that Lacks signed, typical for the time period, gave doctors permission to treat her, but included no stipulations regarding research. Lacks had no knowledge that her cells had been harvested, and her family was not told that the HeLa cells which propelled scientific advances originated with her. In fact, it was on the day Lacks died that George Gey went on national television announcing that a breakthrough had occurred in cancer research. Holding up the vial of cells, he introduced the world, for the first time, “HeLa” cells. However, from the vantage point of the 1950s, there would ave been nothing particularly troubling about how Gey came to possess her cells. According to Gail Javitt in her article “Why Not Take All of Me?’ Reflections on The Immortal Life of Henrietta Lacks2 and the Status of Participants in Research Using Human Specimens” “At the time neither Gey nor pretty much anyone else in medicine, thought it necessary to ask permission to remove tissue samples from a patient. Nor would researchers have thought it necessary for family members to be told about the tissue sample’s fate, even if that fate involved a dramatic scientific discovery using their loved one’s tissues.”
Due to this level of consideration–or lack thereof—the source of HeLa cells was incorrectly identified in textbooks as Helen Lane until almost two decades after Henrietta Lacks’ death. Her family was understandably distressed to learn about their mother’s then unknown legacy; how could their mother, whom her younger children did not even remember, still be “alive”? Moreover, with the discovery of her identity came unwanted media attention and anger at the knowledge that that her cells were being bought and sold without permission and acknowledgement of their source.
The subsequent actions of the Hopkins researchers only added to the feelings of deception and exploitation by Lacks’ children. The Hopkins researchers sought to leverage newly discovered DNA fingerprinting methods to determine whether HeLa cells were contaminating other cells cultures. However, to do that, they needed samples of DNA like that of the HeLa cells—the DNA of her children. While the researchers were under the impression that the family understood the reason, they were being asked to donate blood, the family was in fact under the impression that they were providing blood to determine whether they would develop cancer like their mother.
Skloot recounts an episode in which Hopkins researcher, Christoph Lengauer, invited two of Lacks’ children, Deborah and Zakariyya, to his laboratory to show them descendants of Lacks’ original cells. “In addition to explaining the basics of cell biology in a way that they could understand, Lengauer acknowledged that the cells had come from a person, who was important not only to researchers but to her family members.” Their interaction reveals the different perceptions held by various parties in the research enterprise and the still complex and unresolved issues at play in the use of human specimens.
“Yeah, Hopkins pretty much screwed up, I think,” Christoph said.
Deborah bolted upright and looked at him, stunned to hear a scientist-one at Hopkins, no less-saying such a thing. Then she looked back into the microscope and said, “John Hopkin [sic] is a school for learning, and that’s important. But this is my mother. Nobody seem to get that.”
“It’s true.” Christoph said. “Whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history.”
The discussion between Lengauer and Deborah also touched on whether the family should have received a share in the monetary profits from HeLa cells.
“Her cells are how it all started,” [Christoph] said. “Once there is a cure for cancer, it’s definitely largely because of your mother’s cells.” “
Amen,” Deborah said. Then, without a hint of anger, she told him, “People always gonna be makin money from them cells, nothing we can do about that. But we not gonna get any of it.”
Christoph said he thought that was wrong. Why not treat valuable cells like oil, he said. When you find oil on somebody’s property, it doesn’t automatically belong to them, but they do get a portion of the profits. “No one knows how to deal with this when it comes to cells today,” he said. “When your mother got sick, doctors just did what they wanted, and patients didn’t ask. But nowadays patients want to know what’s going on.”
The duties that Hopkins did or did not owe to Henrietta Lacks or her family members at the time their cells were removed are beyond the scope of this paper. “Lengauer’s words have relevance to the modern debate about the use of human tissue in research in their simple acknowledgment of the human origins of tissue samples used in research, of the emotions and feelings of attachment that contributors of tissue may possess towards their specimens regardless of whether they have formal legal rights to them, and thus the perils of failing to show respect for and of communicating clearly with these contributors.” However, as public opinion research suggests, the contributors of human tissue largely value and support their specimens for research, they, as Lengauer phrased it, “want to know what’s going on” with their tissue. Moreover, many of these contributors believe that researchers should be obliged to inform them when their tissues are used in research.
As the use of HeLa cells exemplify, the use of cells and tissues for research bring forth a myriad of legal and ethical questions. Javitt asks some of these questions in her article; How should we consider the contributors of these cells and tissues? Are they human subjects of research? Javitt asks us to consider the consequences that might stem from this classification; “Should contributors be given the opportunity to specify the type of research that they will permit, or prohibit, with their specimens; Should they be entitled to potential profits that may accrue to researchers from the use of their tissues; Should the contributor have access to any health information derived from the research—should others? Jevitt next asks what the rules should be concerning the voluntary provision of tissues by patient groups to researchers for the sole purpose of identifying the cause of their disease and developing diagnostics and potential cures for their condition. And finally, she asks whether the provision of our tissues and cells for research is a moral imperative and even our civic responsibility. And if so, does that give rise to a reciprocal moral imperative to ensure that all participants have access to the medical therapies that their cells, among millions of others, helped to produce?
Henrietta Lacks’s story is just one example of the way that these questions might take shape in the world. But her experience—and that of her family–reminds us that as we move forward in a world largely dictated by bioethical advances, it is imperative that we examine these questions and work towards finding ethical and universal answers.
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