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Weird History: Henrietta Lacks
Henrietta Lacks: An Ordinary Life
On August 1, 1920, a girl named Loretta Pleasant was born in Roanoke, Virginia, the ninth of a total of ten children. After her mother's death during childbirth in 1924, Loretta's father, Johnny Pleasant, was overwhelmed with caring for all of his children and deposited them among various relatives in the area. By this point, for some unknown reason, Loretta Pleasant was known as Henrietta Lacks. At the age of four, Henrietta was given over to her grandfather, Tommy Lacks, who lived in Clover, Virginia. Henrietta, her grandfather, and her first cousin, David Lacks, lived together in former slave quarters and labored with other members of the family in the tobacco fields.
David Lacks, pronounced "Day" in the Lacks drawl, was five years older than his younger cousin, but the two were fast friends. Day dropped out of school in fourth grade; Henrietta completed sixth grade before she worked on the farm full-time. They grew up surrounded by cousins and extended family, including a cousin called "Crazy Joe" Grinnan. Crazy Joe earned his name through a serious of elaborate ploys to win a date with Henrietta, the prettiest of the Lacks cousins. He had little success, given that Day and Henrietta had been sharing a room for years. At the age of fourteen, Henrietta gave birth to her and Day's first child, Lawrence Lacks. Four years later, in 1939, she had a daughter, Elsie Lacks. In 1941, she married Day and the couple moved to Maryland--Day had been offered a job at a steel plant. Crazy Joe reacted to the news by stabbing himself in the chest, nearly succeeding in killing himself. The marriage and the move went over well with the other cousins, except for one named Gladys, who insisted Day was no good for Henrietta. The popular conclusion was that she was jealous of Henrietta's good looks.
The couple and their two children moved to Turner Station, an African-American neighborhood in Baltimore county. With the bombing of Pearl Harbor, the steel business was booming. African-Americans were given the most dangerous jobs at the Bethlehem Steel Plant, soon to be the largest steel plant in the world, but the wages were substantial, if still less than what their white counterparts received. Henrietta became a housewife and had three more children: David "Sonny" Lacks Jr. in 1947, Deborah Lacks in 1949, and Joseph Lacks in 1951. On the weekends, she would return to Clover with the children and help in the tobacco fields or perform other chores.
However, darker clouds were on the horizon. Elsie Lacks, Henrietta's second child, had been born "special" or "touched." It is likely she suffered from epilepsy and/or mental retardation. Elsie took after her mother in her looks, but never spoke. Henrietta took great effort in her care, and by all indications loved her daughter deeply. Indeed, family accounts often recall Henrietta's remarkable way with children, able to tame the most unruly and calm the inconsolable. However, with the birth of three more children and Elsie descending further into incomprehensible depths, it soon became impossible for Henrietta to manage all of her children along with her eldest daughter's condition. Before the birth of Joseph Lacks in 1951, Elsie was committed to the Crownsville State Hospital. In past times, it had been called the Hospital for the Negro Insane. Henrietta visited her once a week, but several cousins believed it was the most heartbreaking experience of Henrietta's entire life to send her daughter away.
Despite this, for the moment, the Lacks' lived a relatively ordinary life, sharing in the trials of many other lower-class African-Americans at the time. Life was hard, but the joys of family made it bearable. Henrietta Lacks was deeply devoted to her husband and her children. Then, starting in 1950, Henrietta began to feel that there was something wrong with her body. "A knot," as she described it. She consulted with female friends and family, and eventually decided to see a doctor when the feeling persisted.
After a visit to John Hopkins, one of the few major hospitals in the area that would treat African-Americans, Henrietta was told she was only pregnant again (with her third son, Joseph). But Henrietta knew it was more. Joseph Lacks was born soon after, but the bleeding persisted and the knot was still there. Henrietta reluctantly visited John Hopkins again. The doctor on duty, Howard Jones, found a lump on her cervix, and he took a sample for testing. The test came back positive for cervical cancer--"Epidermoid carcinoma of the cervix, Stage I." More than that, the test indicated that the tumor had grown at an alarming rate, or else it wouldn't have been missed by Jones's colleagues three months before.
Jones was initially interested in Henrietta's cells because he and his superior, Dr. Richard Wesley TeLinde, were involved in a national debate about what constituted cervical cancer and how it should be treated. At the time, the vast majority of medical professionals believed that there were two kinds of cervical cancer--invasive and non-invasive. Invasive cancers were dangerous because they had infiltrated the cervix, and non-invasive cancers were presumed benign because they had not. Dr. TeLinde believed that non-invasive cervical cancer was merely an early stage of the dangerous, invasive cervical cancer. He reacted quickly and--in the opinion of many doctors--extremely, removing parts of the uterus, cervix, and vagina to prevent the non-invasive cancer from progressing. Unwittingly, the patients of John Hopkins--by and large poor, uneducated African-Americans--were part of the largest study ever done to try to discover a link between invasive and non-invasive cancers. Dr. TeLinde recruited John Hopkin's head of tissue culture research, Dr. George Gey, to help him with his study. Henrietta seemed destined to be just another data point, but her cancerous cervical cells were special.
Dr. George Gey was embroiled in his own quest to breed the first immortal cells--cells that would replicate continuously and reliably in a laboratory setting. He jumped at the chance to grow cervical cells for Dr. TeLinde in the hopes of finally discovering a strain of immortal cells. Henrietta's strand--HeLa (the first two initials of the patient's first and last name)--were those immortal cells, capable of reproducing exponentially and endlessly. To this day, strands of HeLa exist around the world. But it wasn't until some twenty years after Henrietta's death--thanks to a 1976 Rolling Stones article, of all things--that her family discovered what had been done with her cells.
How is such a thing possible? Doctors were not morally or legally obligated at the time to inform their patients that they were taking tissue samples. Henrietta Lacks felt unwelcome and out of place at John Hopkins, unable to understand the technical language the doctors used and therefore unable to pose any questions about her treatment or the treatment of her cells. This was hardly uncommon. Furthermore, cancer carried such a stigma at that time that it was hardly ever discussed; upon receiving the results of her tumor, Henrietta told no one of the results. She only told Day that she needed to return to the hospital for further tests. In reality, she was returning for treatment.
Henrietta Lacks arrived at John Hopkins Hospital for treatment on February 5, 1951. She signed a consent form which allowed her to undergo "operative procedures....under any anesthetic either local or general that they [the doctors] may deem necessary." They ran tests on her for two days. On her third morning in the hospital, she was prepared for the common treatment of cervical cancer at the time: direct exposure to radium, which was sown into her cervix for a period of two days. For that time, she was to remain in the hospital and rest.
However, before the radium was inserted, some of Henrietta's cells were taken and delivered to the office of Dr. George Gey, all without her knowledge. Sure the cells would die just as thousands of strands had died before them, Gey's staff nonetheless utilized their state of the art sterilization procedures in the transfer and incubation of the cells. They were checked each morning, but the HeLa strand seemed entirely unremarkable. After her two days of rest, Henrietta Lacks had the radium removed and was told to return in two and a half weeks if her symptoms persisted. She was none the wiser to the fate of her cells. Two days after her departure from the hospital, Gey's staff was met with a surprise: the HeLa strand was thriving. However, this was not entirely unprecedented. The strands always died out in the end. The next morning, Gey's staff was astonished to report that the HeLa strand had doubled. The strand was separated into two different test tubes. The next morning, it had doubled again. The growth was truly unprecedented. Samples began to collect, taking over the lab, astonishing everyone who saw or heard about them with their tenacity. Dr. George Gey eagerly divided the immortal cells among his close colleagues, reveling in his success. It wasn't long until the mad dash for HeLa cells would turn into an enormously profitable enterprise.
Henrietta returned for her second round of radium treatment soon after, and the news was good: her tumor was smaller than it had been. As the treatment grew more aggressive, Henrietta was forced to tell some of her close relatives that she had cervical cancer. She brushed off their worry, though she now went to the hospital daily and experienced heavy bleeding for days at a time. Soon, the treatments began to drain her energy and her pelvic area became black from the effects of the radium. Luckily, the doctors were convinced the tumor had receded enough to take her off of the treatment, at least for a time. All was well until John Hopkins informed Henrietta that the treatment had left her unable to bear more children. Though it was standard practice to inform the patient that infertility was a side effect of the treatment, Henrietta had not been warned. She insisted she would not have pursued treatment if she had known what it would do to her.
In June of 1951, Henrietta began to insist that she could feel the cancer spreading inside of her. When the doctors told her that there was "no evidence of recurrence," she believed them. In the span of weeks, the cancer began to cause abdominal cramps. A doctor at John Hopkins wrote again in her file, "no evidence of recurrence." Two weeks later, Henrietta returned. She was could barely walk or urinate. She was given a catheter. A few days later, she returned, the pain unbearable. The doctors felt a mass in her lower abdomen, a mass that blocked her urethra. It was too far along, the doctors told her. They would not be able to operate. She returned each day for treatment, her body absorbing increasingly potent doses of radium in a last ditch attempt to beat back the cancer. On August 8th, Henrietta insisted on checking herself into the hospital. She felt too weak to be at home. Dr. George Gey attempted to take another sample from her, but the cells were poisoned by radiation and died almost immediately.
Soon, Henrietta's suffering was so great that the doctors forbade her children from visiting, insisting that it only aggravated her already delicate condition. Pain medication did little to take the edge off of the tumor or even the treatments, and Henrietta Lacks spent the final weeks of her life in abject anguish, new tumors appearing all over her body. She passed away on October 4, 1951 at the age of thirty-one.
Should patients have full control over their biological matter?
As Day recalls it, John Hopkins called to ask him if they could perform an autopsy on his wife. He refused. The doctors were trapped. While they could remove any tissue they wanted from a live patient, it was illegal to collect tissues from a corpse without the express permission of the next of kin. When Day came to the mortuary, they asked him again, insisting that the tests they would run would help his children some day. Day agreed and signed a consent form. Samples were taken from each of Henrietta's organs.
The cause of death was terminal uremia. Toxins had built up in Henrietta's body, toxins usually flushed with urine, but the blockage of her urethra proved fatal.
Undoubtedly, the HeLa cells advanced the standard of health within the United States and around the world. They have saved millions, perhaps even billions of lives, and are still in use today at every major medical institution in the world, allowing for a universal baseline in every imaginable medical study. HeLa helped create a vaccine for polio. If AIDS or cancer are "cured" in the near future, or even in the distant future, it will likely be because scientists have access to HeLa. On the other had, medical research is an extremely profitable industry, and Henrietta Lacks and her descendants received no share of the billions or trillions made through the direct sale of HeLa or the subsequent discoveries made using HeLa cells. Most importantly, Henrietta Lacks and her family were never asked for permission, and when they were, they were manipulated. In 2010, Ruth Faden, executive director of the Johns Hopkins Bioethics Institute, admitted the mistake of their staff, but pointed out, "it was not at all uncommon for physicians [in that time] to conduct research on patients without their knowledge or consent. That doesn't make it right. It certainly wasn't right. It was also unfortunately common." Today, Henrietta Lacks receives a smattering of recognition--an honorary degree from Morgan State University (2011), a memorial lecture from John Hopkins, an annual commemoration at Turner's Station, a school named after her in the state of Washington--and her family has been honored by the Smithsonian Institution and the National Foundation for Cancer Research. Still, she is largely unknown and unrecognized for her contributions to modern science. The greatest victory for her family was the National Institute of Health's decision to give the Lacks family some say over future access to HeLa cells (2013).
Henrietta Lacks Today
This article would not have been possible without the remarkable efforts of Rebecca Skloot. She heard about HeLa in a biology class and became fascinated with the woman behind the cells. When she began her research, not even the name of the donor of the strand was clear; variations include HElen LAne, HElen LArson, and HEnriette LAkes. Doctors had purposely used different names to preserve the privacy of the Lacks family, and it certainly made tracking Henreitta Lacks down more difficult.
But Skloot persisted. She read every article she could about HeLa cells and their donor, collecting information for the closest thing to a cohesive account of Henrietta's life in existence. However, something was missing: a personal touch. Who was Henrietta Lacks, besides the established description of a poor, uneducated African-American woman with cervical cancer? Skloot set out to track down the Lacks family. She slowly earned the trust of the understandably recalcitrant Lacks', who distrusted anyone with too much interest in Henrietta or who was a doctor, scientist, or lawyer. With their help, Rebecca Skloot brought Henrietta Lacks to life again, far more than the immortality of her cells ever did.
This is certainly a long article, but it barely scrapes the surface of Henrietta Lack's incredible, immortal life. If you're interested in learning more, read Rebecca Skloot's book. I don't have any association with her, but I, along with millions, owe her a debt for bringing this extraordinary tale to the public's attention.