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Summary and Analysis of The Immortal Life of Henrietta Lacks
By Rebecca Skloot OPEN ROAD INTEGRATED MEDIA
Copyright © 2017 Open Road Integrated Media, Inc.
All rights reserved.
ISBN: 978-1-5040-4356-4
CHAPTER 1
Summary
Part One: Life
We first meet Henrietta Lacks, a young African American mother of five, at Johns Hopkins Hospital on January 29, 1951. After experiencing pelvic pain and abnormal bleeding for more than a year, she and her husband drive nearly twenty miles from their home to the hospital in Baltimore, as it is one of the few locations at the time that treats black patients. Hopkins, which was built as a charity hospital for the sick and poor in 1889, is segregated; Henrietta sees Dr. Howard Jones, the gynecologist on duty, in a "colored-only" exam room. Dr. Jones finds a tumor on her cervix.
After her exam at Hopkins, Henrietta receives a diagnosis of stage I epidermoid carcinoma of the cervix. At the time of her diagnosis, Dr. Richard TeLinde, a Hopkins gynecologist and one of the leading experts on cervical cancer at the time, was researching new ways to detect and treat the disease. To test his hypotheses, he needs to study samples of cancerous cells from patients. He enlists George Gey, the intelligent, driven, yet slightly reckless, head of tissue research at the hospital, to help him harvest some of her cervical cells and put them under a microscope.
Meanwhile, Gey was working on his own project: trying to grow the first "immortal" human cells — ones that would continually reproduce themselves outside of the body. These cells could be used for any type of research on human cells that wouldn't be possible on a living person, such as finding a cure for cancer.
Over the course of Henrietta's treatment, surgeons remove a small piece of her normal cervical tissue and a piece from her tumor — without her knowledge or permission — and give them to Gey who, with the help of his lab assistant, Mary Kubicek, transfer the material into a culture for them to grow.
At the time, the medical community considers a patient's "participation" in medical research as a fair trade for free healthcare. While her healthy cells die soon after, her cancerous cells continue to duplicate every twenty-four hours. Amazed that he may have grown the first immortal human cells, Gey eagerly shares samples of Henrietta's cells with his colleagues. Before long, Henrietta's cells are in labs all over the world. Researchers can conduct experiments on them to see how human cells will react to difficult treatment methods.
While Henrietta bravely endures her treatments and continues to care for her children, she grows weaker and her pain intensifies. Doctors discover her cancer has spread throughout her body; little can be done, except try to ease her pain.
According to a colleague, Gey visits Henrietta in the hospital not long before her death and tells her that her cells will make her immortal. She replies that she is glad some good will come of her suffering. On October 4, 1951, less than a year after her diagnosis, Henrietta dies.
Before Henrietta's diagnosis, she had lived an average life. She was raised by her maternal grandfather, Tommy Lacks, in Clover, Virginia, where her ancestors had been slaves and the family still worked on tobacco farms. Henrietta grew close to her first cousin, David "Day" Lacks, who also lived with Tommy. Henrietta attended school through the sixth grade, while Day went through the fourth grade. Like all of the Lacks children, they left school young because their family needed their help in the fields.
Their relationship deepened and they had a son, Lawrence, and a daughter, Elsie, who was epileptic and had intellectual disabilities. Henrietta and Day married in August of 1941. After the bombing of Pearl Harbor just months later, the family moved to Turner Station, a small black community just outside Baltimore, so Day could take a job at Bethlehem Steel's Sparrows Point steel mill. With steel in great demand for the war effort, Day's new job was lucrative compared to his old work in the tobacco fields. Henrietta found friends in their new town and was loved by many. She was kind, fun, beautiful, caring, and always helped those in need.
In 1999, author Rebecca Skloot, who learned about the HeLa cells in a community college biology class, first tries reaching out to Henrietta's family. After an initial enthusiastic response from Henrietta's daughter Deborah, Skloot is stonewalled by Day Lacks and is stood up by Henrietta's son Sonny. Skloot also visits Clover and finds the once-bustling town is poverty-stricken, run down, and sparsely populated.
Need to Know: The book's first section gives us a glimpse of who Henrietta is as a person — information long ignored or forgotten by the scientific community that has worked with her cells for decades. As a wife and mother, Henrietta always puts her family first, even through her illness.
Racial prejudice is felt in every step of Henrietta's life and medical treatment — beginning with her first visit to Hopkins when she is segregated into the "colored-only" waiting and exam rooms. The treatment of African Americans by white doctors since the time of slavery and the resulting distrust of doctors and hospitals in Henrietta's family complicated their understanding of and feelings toward how her cells were used. They were resistant to talk to Rebecca Skloot, as journalists had long demanded to talk to them without ever offering any information on what happened to Henrietta's cells or why they were never informed or compensated.
Part Two: Death
After Henrietta's death, Day Lacks is left to care for his daughter, Deborah, and three sons, Lawrence, Sonny, and Joe (Elsie, who suffered from epilepsy, had been institutionalized before Henrietta's diagnosis). Poor and hungry, Henrietta's children have difficult childhoods. Deborah endures years of sexual abuse at the hands of her mother's cousin Galen, who has moved in with the family after Henrietta's death. His wife, Ethel, is equally cruel. She relentlessly beats and starves the children. Their father, Day, either doesn't believe his children, or looks the other way.
Lawrence drops out of high school to join the military. His girlfriend, Bobbette, becomes a mentor to the young Lacks children. She helps Deborah confront Galen's sexual abuse, and urges her to stay in school. Joe, Deborah's youngest brother and the sibling Ethel treats the worst (she often ties him up in the basement, beats him, and leaves him for long periods of time), grows up full of rage and is frequently in trouble with the law; in 1970, he is sent to prison for the murder of a neighborhood man. While in prison, Joe converts to Islam and changes his name to Zakariyya Bari Abdul Rahman.
Unbeknownst to her family, Henrietta's cells are on their way to becoming famous in the scientific community, because George Gey sends samples of her immortal cells to labs around the country. They are first used in the testing of Jonas Salk's polio vaccine, which helps stop one of the most widespread epidemics ever, and eradicates the disease in the United States.
Ironically, this study is led by the Tuskegee Institute in Tuskegee, Alabama, where, at the same time, horrific experiments are being conducted on black men with syphilis. In the nownotorious Tuskegee syphilis experiments, men are denied penicillin treatment so scientists can study the progression of the disease.
In 1953, a scientist in a Texas lab is running tests on the cells and sees chromosomes clearly for the first time, leading to the discovery that normal human cells have forty-six chromosomes. The cells are also used in commercial areas, including the cosmetics industry.
As more researchers want to use HeLa cells for more projects, the demand exceeds what the Tuskegee Institute can supply. Microbiological Associates, a company based in Bethesda, Maryland, creates a factory where the cells can be reproduced on a large scale; they sell to laboratories around the world. From the so-called "HeLa factory," the multibillion-dollar industry of selling human biological materials begins.
At the time, there is no clear ethical code for having patients or research subjects grant their consent for various tests or procedures, or for compensating them for any money made off their cells, tissues, or organs. For example, Chester Southam, a virology expert at Sloan Kettering Institute for Cancer Research, was curious to know if HeLa cells can infect healthy bodies.
He injected hundreds of healthy people with the cancer cells — mostly inmates from the Ohio State Penitentiary, without their knowledge — and found that healthy immune systems could fight off the disease. He also injected the cells into sick patients — without their consent — and found that the cells grew into tumors.
Some lawyers and doctors invoke the Nuremberg Code — drawn up in the aftermath of the horrific experiments Nazi doctors conducted on Jews during the Holocaust — which calls voluntary consent "absolutely essential," but the code is not law and it is difficult to ascertain how scientists and doctors are interpreting it. The government is nervous about "hindering scientific progress," so experimentation continues to be unregulated for the most part.
The phrase "informed consent" is first used in a legal document in 1957 after a patient sues his doctor when he becomes paralyzed from a routine surgery for which he was told there was no risk. Eventually, the National Institutes of Health requires that all projects they fund have to be examined by an independent board to ensure that consent by patients is given. However, there are hundreds of unethical experiments happening at the same time; Southam's was only one of many.
African Americans had even more reason to distrust the medical community, when it came to consent. Before the abolition of slavery, doctors tested drugs and performed operations on slaves without anesthesia, and in the early 1900s, corpses of black citizens were often exhumed from graves and sold to medical schools. From a young age Henrietta's children were reminded of stories they've heard about "night doctors" who kidnap black people and infect them with diseases.
When they finally learn about the HeLa cells, Day and his children are rightfully outraged that for so long they were not informed or compensated for the major role Henrietta's cells played in the development of twentieth-century medicine.
In 1960, HeLa cells make it to space. Scientists are studying how human cells act in orbit. They find that normal cells continue to divide normally, but cancerous cells such as HeLa cells become stronger, dividing at a much faster rate.
Geneticist Stanley Gartler makes a startling discovery in 1966 known as the "HeLa bomb." Henrietta's cells are discovered to be so potent, it is clear that scientists have been working with contaminated cell cultures in labs around the world, and the results of thousands of studies may have been tainted.
Gartler first infers this when he finds a rare genetic marker named G6PD-A that has only been detected in African Americans (and is present in HeLa), showing up in labs in numbers out of proportion to the general population. For this marker to turn up in cell cultures around the world means they must have been contaminated by HeLa.
Need to Know: In the decades after Henrietta Lacks's death, HeLa cells were used to develop the polio vaccine, study how cancer cells grow, and were sent up to space, all in the name of science. Despite the incredible success scientists were having, Henrietta's family was left struggling, financially — and was unaware that her cells were even taken.
The disconnect between her family and her cells reflect a medical institution that had not yet adopted a protocol for establishing patient consent and also had a legacy of racial discrimination.
Rebecca Skloot traces the early years of the patients' rights movement as some doctors and patients call for laws that make informed consent mandatory. Unfortunately, it is too late for Henrietta. Her family was shocked when they discovered that part of her was still alive, her cells were being sold to labs, and they received no compensation or recognition.
Part Three: Immortality
In 1973, a friend of the family — a doctor — passes through town. While catching up with Bobbette Cooper (née Lacks), he makes the connection that she is related to Henrietta Lacks — the source of the HeLa cells he used in his work. This is the first time the Lacks family hears that Henrietta's cells are alive and being used in labs throughout the world. Lawrence, Bobbette's husband, calls John Hopkins but no one is able to answer his questions.
After Stanley Gartler drops the HeLa bomb, scientists need to develop tests to isolate HeLa cells and stop any further contamination. To do so, researchers have to get genetic samples from Henrietta's relatives.
In the same year that the Lacks family learns about the HeLa cells, Susan Hsu, a postdoctoral fellow of John Hopkins geneticist Victor McKusick, comes to Day's house to take blood samples from his children. Hsu attempts to explain why she is interested in Henrietta's children's blood but between her broken English (Hsu is originally from China), her and Day's heavy accents, and Day's lack of education, the message is lost in translation. The family believes they are being tested for cancer.
After her earlier failed attempts to contact the Lacks family, Rebecca Skloot slowly begins to gain Deborah Lacks's confidence and she works with her to learn more about Henrietta and the HeLa cells. While the men in the Lacks family are more concerned with getting payment for HeLa cells — especially since selling the cells to labs has become a multibillion-dollar industry — Deborah is worried that she will develop cancer like her mother. Generations of the Lacks family struggled financially, and it is difficult for them to rationalize the profits from the HeLa business when they can barely afford basic necessities such as health insurance. When she never receives the results of what she believes to be her "cancer test" from Hsu's blood draw, Deborah becomes even more determined to learn about HeLa.
Together with Skloot, Deborah learns to interpret her mother's medical records and the articles about the HeLa cells that have long puzzled her. They travel to the site of what was once the Hospital for the Negro Insane, where Deborah's sister Elsie was institutionalized, and learn that she died at age fifteen.
Johns Hopkins cancer researcher Christoph Lengauer invites Skloot, Deborah, and Zakarriya — out of prison and in an assisted-living facility — to his lab to view HeLa cells through a microscope. For the first time, someone from Johns Hopkins answers their questions. The group learns that the reason Henrietta's cells are so strong is because of the nature of her tumor. HPV-18, a particularly aggressive strain of HPV, had inserted its DNA into her eleventh chromosome, turning off the gene that suppresses tumors. Ultra-strong cells contributed so much to science, from polio to AIDS research to discovering that only mutated cells are able to achieve immortality.
Zakarriya and Deborah are finally beginning to understand how their mother's cells contributed to science. The healing process has begun.
Deborah finds spiritual closure as well when she and Rebecca visit Henrietta's hometown of Clover and meet with her cousin Gary Lacks. A preacher, Gary performs a "soul cleansing," asking God to lift the burden of her mother's cells off of Deborah. Skloot is personally moved by the power of Deborah's faith, which has been able to soothe her fears and anger in a way that any answer from science could not.
Long suffering from high-blood pressure and diabetes, Deborah dies of a stroke in 2009.
Need to Know: Skloot brings Henrietta's story to the present day as she and Deborah examine the path HeLa cells took to become a tool that changed the course of medicine. Sadly, it took decades for anyone in the medical community to fully explain to the family why the cells were taken and how they were used.
Although her mother died when she was very young, Deborah devoted years of her life to learn what had happened to her mother's cells. The journey brought her years of fear and anxiety and affected her health. While her mother's biology helped scientists create new ways to diagnose and treat disease, Deborah struggled to pay for the medication she needed for her high-blood pressure and diabetes. Beyond understanding the science of what HeLa cells are and how they are used, Deborah needed a spiritual cleansing to finally feel closure. The religious aspect of Deborah's life provides a contrast to the hard science in the book — an answer from God was just as important to her than any explanation from scientists.
(Continues...)
Excerpted from Summary and Analysis of The Immortal Life of Henrietta Lacks by Rebecca Skloot. Copyright © 2017 Open Road Integrated Media, Inc.. Excerpted by permission of OPEN ROAD INTEGRATED MEDIA.
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