In the Prologue to The Immortal Life of Henrietta Lacks, author Rebecca Skloot describes an old photograph of a pretty, fearless-looking young woman with light brown skin. It is a picture of Henrietta Lacks, who died of cervical cancer in 1951. A few months before her death, a doctor cut out a small sample of her cancer cells, which became the first and most important line of human cells ever to survive and multiply indefinitely in the laboratory environment. Her cells have helped scientists make some of the most important advances in modern medical history—but they were taken without her knowledge and without her permission.
Rebecca Skloot became interested in this story when, at the age of sixteen, she enrolled in a community college biology class to fulfill a high school science requirement. Her teacher, Donald Defler, gave a lecture about the amazing qualities of human cells. In it, he mentioned that cell reproduction was “beautiful…like a perfectly choreographed dance.” He explained that even one mistake in this dance can cause cells to reproduce uncontrollably: cancer.
During his lecture, Defler told his class that when Henrietta Lacks was diagnosed with cancer, scientists had been trying and failing to make human cells reproduce in a laboratory for decades. For some reason, Henrietta’s cells were different. They survived and reproduced indefinitely in a tissue culture, becoming a cell line scientists named HeLa. HeLa cells have now lived outside Henrietta’s body longer than they lived inside it, and they are still helping researchers learn about human cells, to develop treatments for cancer, and to study countless other diseases.
At the end of his lecture, Defler added one piece of personal information about Henrietta Lacks: “She was a black woman.” Rebecca wanted to know more, so she found Defler after class and asked whether Henrietta Lacks had known how important her cells were. Defler did not know. Neither Rebecca’s biology book nor her parents’ encyclopedia had any further information either.
When Rebecca went on to study biology in college, she found that “HeLa cells were omnipresent” in her field. She continued to seek out information about Henrietta Lacks, but no other professors mentioned her. Many college biology textbooks said that the woman who produced the cells was named Helen Lane.
Eventually Rebecca found some articles about...
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Chapter 1 Summary
Shortly after her daughter Deborah was born, Henrietta Lacks told a group of female friends and cousins that she felt something wrong in her womb. She described the feeling as “a knot inside me.” The other women encouraged her to see a doctor. Henrietta did not heed their advice but did not complain about the pain again. Not long afterward, she found out she was pregnant with her fifth child. Her friends thought that the "knot" must have been the baby. Henrietta said they were wrong but did not talk to a doctor about it.
A few months after her youngest son, Joe, was born, Henrietta began to experience vaginal bleeding at the wrong time of the month. She took a hot bath, inserted a finger into her vagina, and found
a hard lump, deep inside, as though someone had lodged a marble just to the left of the opening of her womb.
At this point Henrietta could no longer put off a visit to the doctor. Her husband drove her to the gynecology clinic at Johns Hopkins hospital in East Baltimore. This hospital was twenty miles from their house, a good deal further than several other hospitals in the area—but it was the only one that offered treatment to black patients like the Lackses.
Howard Jones, the gynecologist on duty, listened to Henrietta’s complaint and flipped through her chart. He noted a long history of untreated medical conditions, including a series of nose and throat problems, a possible case of sickle cell anemia, and untreated gonorrhea and syphilis. Henrietta had refused most of the tests and treatments doctors had recommended for these conditions.
Rebecca Skloot notes that Henrietta probably refused health treatments because
walking into Hopkins was like entering a foreign country where she didn’t speak the language.
She had only a seventh-grade education, and she had spent her life working on farms and raising her children. She only visited doctors “when she thought she had no choice.”
During the exam, Howard Jones found exactly what Henrietta said he would find: a cervical tumor. It was “the size of a nickel,” and it looked “like grape Jello.” He took a biopsy and sent it to the lab for testing. Afterward, he noted that doctors had not seen the tumor a few months before, when Henrietta was at Johns Hopkins to give birth to Joe....
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Chapter 2 Summary
Henrietta Lacks was born in 1920, the eighth of ten children. Her mother died in 1924, at which point her father took all the children to his family’s home in Clover, Virginia and split them up to live with various relatives. Henrietta was placed with Tommy Lacks, her grandfather, in a four-room cabin that had once been home to slaves. This cabin was the center of Lacks family life, and everyone called it the home-house.
When Henrietta moved in, Tommy Lacks was already raising another grandchild, Henrietta’s cousin David Lacks. David, whom everyone called Day, had been born to an unwed mother on the home-house floor nine years before. Henrietta spent the rest of her life with Day, eventually marrying him and giving birth to five children.
In childhood, Henrietta and Day got up early each morning to tend the farm animals and the kitchen garden. When they were finished, they went to work in the tobacco fields with their siblings and cousins. In early childhood, they attended school as well, but neither made it past elementary school.
When they were not working, the many children of Henrietta’s extended family went swimming, held bonfires, and played games together. In summer, the cousins frequently slept all together in a crawl space over a kitchen outbuilding near the home-house. In harvest season, they accompanied Tommy one evening each week on trips to South Boston to sell tobacco. On these trips, they and other black farming families slept alongside farm animals in the basement of the warehouse where the tobacco was sold.
In her early teen years, Henrietta was popular with boys because she was so pretty. Her affections wavered between her cousin Day and another cousin, Crazy Joe. However, she had been sharing a room with Day since she was a young girl, and the eventual result “didn’t surprise anyone: they started having children together.” Their son Lawrence was born when Henrietta was fourteen. Four years later, his sister Lucile, nicknamed Elsie, was born. She was epileptic and mentally retarded. The Lacks family described her as “simple” and “touched.”
Henrietta and Day married two years after Elsie's birth, when Henrietta was twenty years old. After the wedding, they went straight out to work in the tobacco fields. However, their life as farmers did not last much longer. It was 1941, and the United States was just getting...
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Chapter 3 Summary
In 1951, the Johns Hopkins gynecologist Howard Jones and his boss, Richard Wesley TeLinde, were working hard to develop and improve methods for treating cervical cancer. At the time, doctors had just begun to use the Pap smear test to screen women for cancer. However, there was widespread misinformation and disagreement about what to do with the information from the screenings. Among other things, doctors disagreed about which tests indicated cancer, and about whether doctors should leave some cancers alone or treat all of them with invasive surgical procedures.
Because of the lack of information about cervical cancer, healthy women were sometimes accidentally diagnosed with cervical cancer. In such cases, doctors often performed a hysterectomy—the surgical removal of the uterus—on a perfectly healthy woman. Meanwhile, women with cancer often got passed over for surgery, either because their doctors failed to recognize cancer cells when they saw them, or because they had a doctor who believed certain cervical carcinomas were not dangerous.
TeLinde wanted to improve cancer treatment, both to minimize unnecessary hysterectomies and to prove that all women with cervical carcinomas needed invasive treatment. To this end, he used information and tissue samples, without consent, from women who came to Johns Hopkins for treatment. At the time, this was a common practice.
TeLinde wanted to grow and compare living samples of healthy and cancerous cervical tissue. To this end, he enlisted the help of George Gey, the scientist in charge of tissue culture at Johns Hopkins. Gey was happy to help TeLinde in exchange for a steady supply of cervical tissue samples from TeLinde’s patients. Gey wanted to use these samples to grow
the first immortal human cells: a continuously dividing line of cells all descended from one original sample.
Howard Jones found out that Henrietta’s tumor was malignant on February 5, 1951. He informed Henrietta immediately, but she did not tell anyone the diagnosis. She only said that she needed to go to the hospital for a few days for some treatment. Day dropped her off at Johns Hopkins the following day. There she signed a form that gave Johns Hopkins doctors permission “to perform any operative procedures…that they may deem necessary.”
After checking into the hospital,...
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Chapter 4 Summary
When Henrietta Lacks’s cells arrived in George Gey's lab, his assistant, Mary Kubicek, was eating a sandwich. It was her job to handle new cell samples, but today she dawdled a while before beginning. These attempts to grow immortal human cells always took hours of tedious work, and thus far, they had always failed.
In spite of its failures, George Gey’s lab was state of the art for its time. Gey's wife, Margaret, had been instrumental in helping to overcome some of the most difficult obstacles to growing cells in culture. The first of these was that nobody knew exactly which ingredients were necessary in the liquid used for feeding cells. Slowly, over the course of years, the Geys had developed a recipe that included an array of ghastly ingredients:
the plasma of chickens, puree of calf fetuses, special salts, and blood from human umbilical cords.
Since they worked at a hospital, it was relatively easy to come by the cord blood. The rest of the ingredients were harder to procure, and George frequently visited slaughterhouses for cow fetuses and chicken blood. It was Margaret who developed the proper technique for sterilizing the chicken chest and shoving a syringe into its heart to obtain the blood; and it was Margaret who plucked and cooked the chickens if they happened to die from the stress of this procedure.
Margaret Gey was also responsible for maintaining sterility in Gey’s lab. She had been trained as a surgical nurse, and she brought the sterilization procedures from surgery rooms into the lab environment. The successful growth of the HeLa cells would not have been possible otherwise.
When Mary Kubicek started working on Henrietta Lacks's cells, she followed Margaret's sterility procedures to the letter. She sterilized her work station with hot steam before donning a clean surgical gown, mask, and gloves. When these preparations were finished, Mary entered the station and sliced the pieces of Henrietta’s healthy and cancerous cervical tissue into tiny pieces. She dropped them into test tubes prepared with chicken blood clots, and wrote HeLa, for Henrietta Lacks, on the side of the tubes. Finally, she deposited them in the incubator.
George Gey was a “reckless visionary” and an extremely hard worker. He came from a poor family but worked his way through college and medical school doing...
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Chapter 5 Summary
Soon Henrietta Lacks returned home from the hospital and resumed her normal life. On the weekends, she took her family to her childhood home in Clover, where they all helped in the tobacco fields and enjoyed time with the family. Her family did not know that she was sick. They were, however, aware of another heartache in her life: recently she had decided it was too difficult to care for her mentally retarded daughter, Elsie. At her doctors’ recommendation, Henrietta had committed Elsie to a mental hospital.
Henrietta kept her cancer a secret through her first and second radium treatments. After that, doctors told her that the tumor was shrinking, but that they needed to perform X-ray therapy. This meant daily visits to the hospital for a month, a difficult proposition because Day worked nights and could not drive Henrietta home until late. Henrietta decided to spend the intervening time at her cousin Margaret’s house, which was not far from the hospital—but this meant admitting to Margaret that she was sick.
Henrietta revealed the truth to Margaret and another cousin, Sadie, at a carnival, at the top of a Ferris wheel. Her cousins were shocked that Henrietta had cancer, but Henrietta seemed intent on keeping the news as low-key as possible. “Nothing serious wrong with me…I’m fine,” she said.
At first, it seemed that Henrietta might be right. Her tumor disappeared after her second radium treatment. The radiation treatments that followed were considered a precaution, to kill off any cancer tissue that remained. After each treatment, she walked to Margaret’s house to wait for Day. For the first week, she seemed healthy and in good spirits. She spent the hours at Margaret’s playing cards and chatting.
Somehow, in the process of treating Henrietta’s cancer, her doctors had missed telling her that her treatments would leave her infertile. After a week of radiation treatments, Henrietta asked her doctors when she would be able to have another child. Doctors explained that she never could, and she told them that she would not have accepted treatment at all if she had known.
Three weeks after the radiation therapy began, Henrietta began feeling weak and sick. She found it difficult to manage the short walk from Johns Hopkins to Margaret’s, and she could only sleep when she arrived. One day she showed Margaret her stomach, which was...
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Chapter 6 Summary
It was not until 1999, eleven years after she first heard of HeLa cells, that Rebecca Skloot found some papers from a gathering called “The HeLa Cancer Control Symposium.” She called Roland Pattillo, a professor of gynecology who had organized the symposium.
On the phone, Pattillo admitted to Rebecca that he knew the Lacks family. However, he said flat-out that he was not eager to put her into contact with them. For over an hour, he pressured her to explain why she wanted to research Henrietta Lacks. “Correct me if I’m wrong, but you are white,” said Pattillo, who was African American.
Pattillo demanded that Rebecca explain what she knew about the historical relationship between African Americans and science in the United States. As if delivering “an oral report…in history class,” Rebecca told him several stories about medical science’s exploitation and mistreatment of African Americans. She began with the Tuskegee syphilis study, in which doctors allowed syphilitic black men to suffer and die in the name of research, even after discovering that penicillin could cure them.
Rebecca called Pattillo every day for three days before he gave her a phone number for Deborah Lacks. With it came a litany of advice:
Don’t be aggressive. Do be honest. Don’t be clinical, don’t try to force her into anything, don’t talk down to her, she hates that. Do be compassionate, don’t forget she’s been through a lot with these cells, do have patience.
Rebecca called Deborah immediately. On the phone, she explained that she wanted to write a book about Henrietta Lacks because the world should know about the woman behind the HeLa cells. To her surprise, Deborah’s immediate response was that “a book would be great!”
Rebecca was afraid to ruin her chances by saying anything wrong, so she simply listened as Deborah talked for forty-five minutes. Deborah jumped around in time, telling stories at random, alluding to thefts and mentioning that one of her brothers had killed a boy. She said she had suffered from serious medical problems because of stress relating to Henrietta’s story.
Eventually Deborah was called away from the phone. When Rebecca called back at the appointed time the following Monday, Deborah sounded completely different. She said that she could not give interviews...
(The entire section is 544 words.)
Chapter 7 Summary
In 1951, not long after Henrietta began her cancer treatments, George Gey appeared in a television interview to talk about his research. He made a brief explanation of how cells were structured and how they became cancerous. Then he held up a bottle of cancer cells—probably Henrietta’s—and said that he hoped to cure cancer someday. At the time, he was already beginning to send HeLa cells to scientists around the world, and scientists were beginning to learn from them by exposing them to toxins, radiation, and infections. In the interview, Gey did not mention Henrietta Lacks by name, but it is unlikely that the public would have paid much attention if he had.
In the 1950s, most members of the public had a negative opinion of laboratory cell cultures. This had been caused by the highly public work of a French scientist named Alexis Carrel. Carrel was a surgeon who had won a Nobel prize for his research on suturing blood vessels, thus paving the way for organ transplants. He dreamed of growing organs for transplant in laboratories, outside the body, and in 1912 he began work in that direction by growing a piece of chicken heart tissue in a lab.
The public was fascinated by Carrel’s chicken heart, and many believed it might pave the way for organ transplants that extended human life indefinitely. Carrel himself was interested in extending human life—but he was a racist who believed immortality should only be available to intelligent, educated white people. He dreamed of becoming the dictator of a small country, and he stated publicly that the provision for equality in the United States Constitution was a bad idea. “The feeble-minded and the man of genius should not be equal before the law,” he said.
Carrel’s chicken heart never brought about the scientific advances anyone thought it would, and it soon fell out of public favor. Its biggest effect on the world was inspiring the horror movie The Blob, about an immortal chicken heart that grew out of control until it took over the streets and destroyed everything in its path.
Late in Carrel’s life, scientists discovered that his chicken heart was not immortal at all. Intentionally or unintentionally, Carrel had been adding new living cells to his culture every time he “fed” the heart with a mixture of ground-up chicken tissue. By that time, Carrel and his chicken heart had poisoned public...
(The entire section is 430 words.)
Chapter 8 Summary
After Henrietta Lacks’s radiation treatments were complete, doctors saw no more signs of tumors in her body. Henrietta did not believe that she was cured; she told them she thought her cancer was spreading. They told her that she was fine and sent her home. There is nothing in their notes to indicate that she questioned them further. In the 1950s, it was not customary for patients to question doctors’ judgment, or for poor black people to question highly educated white people.
Over the next couple of months, Henrietta repeatedly returned to the hospital to complain of pain. At first, she was told she was fine. After a while, however, doctors found an enormous tumor in her abdomen. Just weeks after they had claimed she was healthy, they diagnosed her with inoperable cancer. There was nothing they could do to help her. Her cousin Sadie later said that Henrietta did not waste away from her illness but did appear to be in great pain: “Her eyes was tellin you that she wasn’t gonna be alive no more.”
A week after declaring her cancer inoperable, doctors X-rayed Henrietta’s body again and found that her tumors had spread further. They began a process of radiation treatment, hoping to reduce the tumors slightly so that Henrietta would not experience so much pain. They did not explain that the treatment was only palliative; she and her family believed they were trying to cure her.
Eventually doctors checked Henrietta into the hospital. While she was there, they tried to take a new sample of her tumor, but it did not survive as the first one had. They also tried to ease her pain with half a dozen different painkillers. None of these had much effect, and there was nothing else to do to help her. Her family visited her daily during this period. When nurses said that it was too upsetting for Henrietta to see her children, Day stopped bringing them inside. However, he brought them to the building and let them play outside her hospital window.
Most people say that George Gey never met Henrietta. There is certainly no written record that he did. But one of his colleagues, a microbiologist, claims that he visited Henrietta in her hospital room just before she died. According to this source, Gey told Henrietta about her cells, and she said “she was glad her pain would come to some good for someone.” The Lacks family does not believe this really happened.
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Chapter 9 Summary
A few days after Day hung up on Rebecca, she drove to Baltimore to speak with his second son, who was also named David, but who went by Sonny. She paged Sonny several times from her hotel room at the Holiday Inn, but he did not reply. While she waited, she reviewed a Rolling Stone article about the Lacks family from the 1970s. As she read through it, she realized that the writer of the article had stayed in the same Holiday Inn when he researched the Lacks family decades before.
Sonny never called back, so eventually Rebecca gave up and set out to find Henrietta’s old address in Turner Station, on the outskirts of the city. It was a poor neighborhood that was generally ignored by mapmakers, and Rebecca had to consult four different maps to figure out how to get there. She knew it had been a booming town during World War II, but since then it had been in decline. Most stores and schools there were closed, and it was notorious for violence and drug abuse.
Rebecca could not find Henrietta’s old house, so she drove to the address of a grocery store in Turner Station that had been proposed as a site for a Henrietta Lacks museum. There Rebecca saw only an old mobile home with some black men sitting on the porch. Unnerved, she circled the neighborhood several times. People waved, smiling and shaking their heads at this young white woman driving in circles. A group of children began to follow her car as a game.
Eventually Rebecca arrived at a Baptist church she had seen mentioned in one of her articles, and she tried to go inside. It was locked, but a preacher soon arrived and took her to the store she wanted—which turned out to be the mobile home with the men on the porch. The men greeted her cheerfully and introduced her to Courtney Speed, a petite but fearless shop owner who had indeed attempted to create a Henrietta Lacks museum at one time.
When Rebecca mentioned Henrietta’s name, Speed looked wary. “You know Mr. Cofield? Did he send you?” Rebecca had no idea who Cofield was, but she admitted that the Lackses were reluctant to speak with her. Speed said she would not give an interview without the consent of the Lacks family, but she did show Rebecca an old BBC documentary about Henrietta.
At the end of this strange day, Rebecca finally spoke to Sonny, who said he had decided against speaking to her. She asked for contact information for...
(The entire section is 449 words.)
Chapter 10 Summary
Soon after her trip to Turner Station, Rebecca drove to Clover, Virginia. There she found a run-down main street full of closed-up shops whose dust-covered merchandise could be seen through the windows. There were some churches, beauty parlors, and one post office still in occasional use—but all were locked when Rebecca arrived. She saw nobody at all except for an old white man with a bicycle who waved hello. She stopped and asked him to direct her to Lacks Town, where Henrietta had grown up. He silently pointed her in the right direction.
As it turned out, Lacks Town was a single road sparsely populated with tiny homes—cabins left over from the slave era, cinderblock shacks, and mobile home trailers. Rebecca drove up and down this road, unsure how to approach the people who lived here. After several trips back and forth, she was flagged down by an old man who asked if she was lost.
When Rebecca asked about Henrietta, the old man said he was her cousin. His name was Hector Henry, but everyone had called him Cootie ever since he had polio as a child. When he was a boy, there was a polio outbreak, but all the iron lungs were in hospitals for white patients. Cootie's skin was fairly light, like a Latino’s, so a white doctor lied about his race in order to check him into a white hospital for treatment.
Cootie invited Rebecca into his house, a plywood and cinderblock structure he’d built on his own, in spite of his partial paralysis from polio. He gave Rebecca a glass of juice and showed her into a living room, where a gospel radio station was playing.
In his living room, Cootie told Rebecca that Henrietta was a good woman, always kind and generous to others no matter what problems she faced in her own life. He said that even after she got sick, she cared for others. He got out the only picture he had of Henrietta, from the Rolling Stone article Rebecca had read.
Cootie had thought a great deal about Henrietta’s cells, and he found it creepy that they were still alive so long after her death. He said her illness must have been “man-made.” When Rebecca did not understand him, he lowered his voice and said, “Voodoo.” He said that spirits and witchcraft were alive in Lacks Town, and that he had seen some himself, adding:
I…know that her cancer wasn’t no regular cancer, cause regular cancer don’t keep...
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Chapter 11 Summary
Henrietta’s suffering went on for months. She had tumors in most of her major organs. Her kidneys were failing. Her stomach was swollen. She received so many blood transfusions that a doctor eventually put a stop to them, saying that she had depleted the supplies in the blood bank.
Word of Henrietta’s blood bank problem soon reached the steel mill where her husband and many of her male cousins worked. By now, the whole community knew about Henrietta’s illness, and they all wanted to help her get better. Henrietta’s cousin Emmett Lacks gathered a group of eight men and took them to the hospital to donate blood for her.
Most of the men who went to give blood that day were cousins of Henrietta’s, men who had moved from the country to Baltimore to work in the steel mill, just as Day had done many years before. When they arrived, Henrietta let these men stay in her home, sometimes for months, until they were able to afford housing of their own. Emmett was the most recent of the men she had helped in this way.
Emmett had often stepped up to help Henrietta, too. Recently, he had taken her for her final visit to Elsie, her epileptic and mentally disabled daughter who now lived at Crownsville Hospital. Elsie had seemed miserable when she was first placed in the hospital, but on this visit she looked fairly clean and content. Henrietta—probably in an effort to convince herself—told Emmett repeatedly that Elsie was happy and safe.
On the day of the impromptu blood drive, Emmett led his little group of eight men to Henrietta’s bedside. Her sister Gladys and cousin Sadie were already there, sitting by the bed looking sad and exhausted. As Emmett and the other men stood by, they saw that Henrietta was tied down. They soon understood why: a fit of pain hit her, and she began screaming and thrashing violently. Years later, Emmett said, “Henrietta rose up out of that bed like she been possessed by the devil of pain itself.” He had never seen anyone so sick before. He and the other men mutely left to give blood for her, but they now understood that this could not save her life. Henrietta was clearly dying.
A few days later, doctors stopped all of Henrietta’s treatment except pain medications. She lasted two more days after that, then woke up and told her sister Gladys that she was ready to go. She asked Gladys to tell Day to take good care of the...
(The entire section is 449 words.)
Chapter 12 Summary
When George Gey found out about Henrietta’s death, he requested an autopsy and further tissue samples. For that, he needed consent from Henrietta’s husband. Oddly, although doctors needed no permission to take tissue from the living, there were clear laws stating that families must give permission before doctors could perform an autopsy or take tissue samples from the dead.
When someone from Johns Hopkins first asked Day for permission to perform an autopsy on Henrietta, he said no. When he went to the hospital later to sign papers, doctors pressed him to change his mind. He ended up giving permission for a partial autopsy, one which would leave the body fairly presentable for the funeral.
Gey sent his assistant Mary to assist with the autopsy. At the time, she had worked with human cell tissue for years, but she had never seen an actual dead body. She fought the urge to vomit as she watched the doctor slice Henrietta open and remove samples of her major organs. Afterward, while the doctor was sewing up his incisions, Mary noticed the chipped red nail polish on Henrietta’s toes. Suddenly it struck her that the Henrietta Lacks was “a real person.” HeLa cells, which Mary had helped to grow, were already becoming important in laboratories all over the world—but this was the first moment when Mary thought of Henrietta as a human being.
Henrietta’s body was taken back to Clover in a pine box. Rain poured down outside as she was transported to the home-house. Out back, her cousins dug her a grave. The small Lacks graveyard was already overcrowded with unmarked graves, so the men repeatedly hit other people’s coffins and had to start over. Eventually they found a spot that was not already occupied.
For several days, Henrietta’s body was left on display in the home-house. Family members and neighbors visited to pay respects. Sadie cried when she noticed the chipped red toenails. She knew that Henrietta would never have allowed her nail polish job to wear out that badly unless she had been feeling truly horrible.
Nobody remembers much from Henrietta’s funeral, but the whole family remembers what happened afterward, while the cousins were filling the hole. The sky turned black, and the wind picked up. It tore the roof off a nearby barn, sending it flying over the new grave. Not far away, a cousin’s house was knocked down, and he was...
(The entire section is 433 words.)
Chapter 13 Summary
1951 brought a polio epidemic to the United States. In 1952, Jonas Salk developed a polio vaccine—but he could not yet begin using it to vaccinate children. First he needed to perform medical tests. To do this, he needed human cells—more human cells than anyone had ever before produced at one time.
The National Foundation for Infant Paralysis (NFIP) soon contacted George Gey, who was known for his work on cell cultures. Gey tested the HeLa cells and found that they were susceptible to polio—a necessary condition for cells used in a trial to test a polio vaccine. He developed a method for growing a great quantity of HeLa cells in a small space, and he found a way to ship living cells through the mail.
Henrietta’s cells turned out to be perfect for the NFIP study. A veritable HeLa cell factory was created at the Tuskegee Institute, a university that was training black scientists and technicians. Tuskegee built a state-of-the-art facility complete with steam sterilizing equipment, large vats of the medium necessary for cell cultures, and equipment for growing cells. Soon Tuskegee was producing about 6 trillion cells per week.
Tuskegee’s HeLa factory provided valuable skills to a large number of highly trained black workers, especially women. Ironically, at the same time, at the same institute, the infamous Tuskegee syphilis studies were underway.
Soon Henrietta’s cells began to be used on a large scale not only in the polio vaccine study, but also in many other studies. The cells were useful to scientists because although they were cancerous, they were still human cells with all normal human components, susceptible to virtually all diseases that affect human beings. In fact, the cancerous nature of the cells made them easier to use in research because they divided so quickly and thus produced fast results.
Researchers exposed Henrietta’s cells to a myriad diseases in order to study how viruses and bacteria attacked cells and spread. This led to many advances in medicine, in the form of both cures and preventative treatments. Researchers also used the cells to develop methods for both cloning and freezing human cells, which helped them to standardize research techniques. Yet more advances followed these developments.
Soon Tuskegee’s cell factory was not big enough to satisfy the demand for HeLa cells. Two men named Samuel...
(The entire section is 489 words.)
Chapter 14 Summary
As HeLa cells helped scientists make several breakthroughs in medicine, the public became curious about the human being behind those cells. George Gey wanted Henrietta Lacks’s name to remain confidential from the public, but many researchers and assistants already knew who she was. Soon one of them leaked Henrietta’s name to the press. The Minneapolis Star published an article, incorrectly revealing the name of the source of the HeLa cells as Henrietta Lakes.
Not long after this story appeared, Gey received inquiries from a magazine writer named Roland H. Berg who wanted to do a human interest story about “Mrs. Lakes” and her family. George Gey's first reaction was to suggest focusing only on the science, but Berg wanted to include a human interest angle.
At the time, patient confidentiality was protected by custom, but not by law, so there was no absolute need to keep Henrietta's identity private. Gey and TeLinde discussed the matter privately in a series of letters. In these letters, TeLinde advised following the custom and withholding further information about Henrietta from the public:
I can see no point in running the risk of getting into trouble by disclosing [confidential information].
Ultimately, Gey wrote to Berg and suggested the use of “a fictitious name” for the woman behind the HeLa cells. Berg never followed through on his plan to write an article. However, several months later, a reporter named Bill Davidson for Collier’s magazine contacted Gey about a similar idea. He wrote a piece about the cell culture and its developments. In it, he wrote that the cells came from someone named “Helen L.” whose cancerous tissue was taken from her body after she died.
Nobody knows for certain who chose “Helen L.” as a pseudonym for Henrietta Lacks. What is known is that George Gey read this article before it was published, correcting several inaccuracies but leaving the false name and the detail about taking the sample during the autopsy. It seems certain that this was a deliberate choice on his part, but there is no written record explaining exactly why. Decades later, Margaret Gey claimed that the choice was not deliberate at all. “It was just that somebody got confused,” she said.
After the publication of the Collier’s article...
(The entire section is 425 words.)
Chapter 15 Summary
After Henrietta’s death, nobody told the young Lacks children what had happened to their mother. In the 1950s, serious illnesses were not discussed openly in families, and children were expected not to ask questions. Because of this, the disappearance of their mother remained a mystery to them for years.
Day had to work two jobs to support his family, so Lawrence, the oldest of Henrietta’s children, dropped out of school to take care of Sonny, Deborah, and Joe. At sixteen, Lawrence got himself a voter registration card that said he was eighteen. This helped him get into pool halls when he wanted a break—but it also got him drafted into the army to fight in the Korean War.
When Lawrence left for the army, Henrietta’s cousin Ethel and her husband Galen moved into Day's house to care for the three youngest children. Ethel had hated Henrietta, and she tortured the kids. She fed them next to nothing, and she kept the refrigerator and cupboards padlocked shut so they could not steal food. In the summers, she took them to Clover, Virginia and forced them to work in the tobacco fields all day with no food or water. If any one of them stopped for a break without permission, she whipped all of them for it.
Joe, the youngest boy, bore the brunt of Ethel’s anger. She whipped him more than the others and often locked him in the basement for long periods of time. He grew up to be an intensely angry person. One of his childhood hobbies was climbing onto the roof and shooting his BB gun at passersby.
When Lawrence came home from the army, he moved into his own house. For several years he did not know that Ethel was abusing his siblings. He found out around the time that he got married, so he and his new wife, Bobbette, took in Sonny, Deborah, and Joe.
This new living arrangement ended the life of abuse for Joe and Sonny, but not for Deborah. Ethel’s husband Galen sexually molested her for years, and more than once he tried to rape her. Once he saw her with a boy her age, and he punched her in the face out of jealousy. Deborah did not tell anyone about his abuse because she worried she would get in trouble. However, Bobbette knew that something was wrong, and she encouraged Deborah to fight off any relative who attempted to molest her. She said:
I know your mother and father and all the cousins all mingled together in their...
(The entire section is 526 words.)
Chapter 16 Summary
The day Rebecca Skloot met Henrietta’s cousin Cootie, he explained that the Lacks family rarely spoke about illnesses or the dead. People knew about Henrietta’s cells, but they no longer said much about Henrietta herself. As he put it, "...her cells done lived longer than her memory.”
Cootie sent Rebecca to speak with another cousin, Cliff, who had been like a brother to Henrietta when they were children. Cliff gave Rebecca a tour of the home-house, which was now unoccupied and falling down from disuse. He also took her to the graveyard where most of the Lacks family was buried. A few of the graves had stones, but most, like Henrietta’s, were unmarked. Cliff found the stone for Henrietta’s mother and pointed out three unmarked graves nearby. He was pretty sure that one of them was Henrietta’s.
During the graveyard tour, Cliff mused aloud about how strange it was that scientists could keep a dead woman’s cells alive for so many years. He called it “a miracle” that cancer cells could be used to cure disease. Then he shouted at the ground, telling Henrietta that her cells had helped people.
Cliff also commented that black and white members of the Lacks family were buried together in the graveyard. He chuckled about how “old white granddaddy” was buried among his black family. He liked the fact that the slave owners of the past were buried among their black relatives, and he said:
They spending eternity in the same place…They must’ve worked out their problems by now!
Throughout Rebecca’s research, the Lackses insisted that there was no racial ill-will in their community. However, they made frequent references to race during her interviews, and racial divides were very much present in their lives. One indication of this is the fact that they did not know their white neighbors, who were also named Lacks, and who were probably distant relatives.
Henrietta’s great-great-grandfather was probably a white slave owner named Albert Lacks. He died shortly after the Civil War, and he willed part of his land to a group of former slaves. His brother Benjamin also left some of his land to his former slaves. There is no written record showing that Albert and Benjamin Lacks fathered these heirs, but the black Lackses who remain in Clover, Virginia all believed that they were descended from these two...
(The entire section is 420 words.)
Chapter 17 Summary
In the mid-1950s, a researcher named Chester Southam began to worry that HeLa cells might be able to infect researchers with cancer. He was not sure whether cancer was even contagious in this way, so to find out, he began injecting small samples of HeLa into the arms of cancer patients. Some of these patients fought off the foreign cells; others developed tumors. Later, Southam performed similar research on prisoners at the Ohio State Penitentiary, all of whose bodies fought off the cancer cells quickly.
At the time, it was not legally required for doctors to obtain consent from patients used in medical research. Over a period of several years, Southam injected over 600 patients with cancer, often without telling them what he was doing. Southam did not feel that his actions were ethically wrong—but when the public found out, most people disagreed with him.
Southam’s experiment became known to the public through three Jewish doctors who refused to help him with his research. These doctors knew that during World War II, Nazi doctors in Nuremburg had performed “unthinkable” experiments on Jewish subjects. After the war, a tribunal wrote a set of recommendations for medical experimentation called the Nuremburg Code. This code laid out strong patient rights recommendations which seemed quite radical at the time. But doctors in the United States were not legally required to adhere to the Nuremburg Code, and many had not even heard of it.
The Jewish doctors’ objections to Southam’s research seemed unusual and unreasonable to their boss, who declared them “overly sensitive” due to their race. When he simply continued the project without the three doctors, they were appalled. They resigned from their positions and made their objections public. This soon led to a national scandal and a far-reaching debate about medical ethics and research practices.
In response to this scandal, the Board of Regents of the University of the State of New York conducted an investigation of Southam’s research. Several of them were horrified—especially when they learned that Southam’s colleagues found nothing wrong with his actions. Most doctors freely admitted to undertaking similar studies themselves.
Soon after this scandal, the Board of Regents and the National Institute of Health issued a strict set of guidelines governing the ethics of medical research....
(The entire section is 428 words.)
Chapter 18 Summary
In the 1960s, HeLa seemed to be everywhere. Scientists had learned a great deal about keeping cells alive in culture, and now they could do so easily. It was so easy, in fact, that amateurs could order HeLa through Scientific American magazine and grow the cells at home.
HeLa even made it to outer space. Both NASA and the Russian Space Program sent HeLa cells into orbit to study the effects of zero-gravity conditions and higher radiation levels on human cells. Studies showed that normal human cells grew normally in orbit, but that the cancerous HeLa cells multiplied more rapidly than ever.
By the 1960s, scientists had observed that most normal cell lines died out in the laboratory over time. Those that remained living became cancerous eventually, and when that happened, they typically took on the traits of HeLa cells. One researcher, a cell culturist named Lewis Coriell, published an article suggesting that this phenomenon might be a result of laboratory contamination of the cell lines. If laboratories accidentally contaminated some cells with bacteria, viruses, or cells from the wrong species, scientific research might suggest incorrect conclusions. In Coriell’s article, he mentioned offhand that HeLa might be able to contaminate other human cell lines.
Most researchers dismissed Coriell’s suggestion about HeLa, but his comments about cross-species cell contamination worried them. In response to the article, a group of respected scientists joined forces and helped to establish the American Type Culture Collection (ATCC), a bank of rigorously tested, pure cell lines.
As this collection was established, it became clear that many scientists had mislabeled or neglected to label the contents of cell cultures. Because of this, many cell lines available for research were not at all what scientists had believed them to be. Some were contaminated with viruses or bacteria; others were primate cells labeled as pig or duck cells. Ultimately, however, scientists traced down several original cell lines and established a bank which everyone trusted to contain uncontaminated and properly labeled cells.
During this period, scientists discovered a process called “somatic cell fusion,” which was known in the media as “cell sex.” In the presence of certain viruses, disparate cells would fuse and merge their genetic material. Researchers soon...
(The entire section is 449 words.)
Chapter 19 Summary
When Deborah Lacks got pregnant at age sixteen, her brother’s wife Bobbette insisted she graduate from high school anyway. Bobbette cared for the baby herself while Deborah attended a school for teenage mothers. Then, after Deborah graduated, Bobbette made her get a job and learn to support herself.
During this period, Deborah’s two older brothers were doing well for themselves. Lawrence, the eldest Lacks boy and Bobbette’s husband, owned his own shop. Sonny had earned his high school diploma, and now he was in the air force.
Joe, the youngest Lacks sibling and the one who had experienced the most severe physical abuse in childhood, had by far the most problems. He dropped out of school at a young age, and he had repeated run-ins with the law during his teenage years. At eighteen, he joined the military, but he constantly picked fights with the other soldiers and with the officers. Because of this, he spent most of his service term in solitary confinement. Ultimately he was discharged and sent home.
Back in Turner Station, Joe began fighting with a young man named Ivy. One day Ivy beat Joe badly. A couple of days later, Joe stabbed and killed Ivy with one of Deborah’s kitchen knives. For a while, the family helped Joe hide from the police, but he eventually he decided to turn himself in.
At his trial, Joe pled guilty, although the judge advised him not to. She requested his medical and psychological files and sentenced him to fifteen years, a lenient sentence compared to the thirty-year maximum for the crime. Joe went to prison, where at first he spent a great deal of time in solitary confinement because of his continued habit of fighting. Eventually he quieted down, converted to Islam, and changed his name to Zakariyya Bari Abdul Rahman.
Around the time Joe went to prison, Deborah married her long-time boyfriend, Cheetah, and gave birth to a second child. Cheetah fell into a drug habit and began to abuse her physically, but she soon grew fed up with this behavior. She began to fight back when Cheetah hit her. On one occasion, she cut him with a knife. On another, she knocked him down their apartment stairs and locked him outside during a winter snowstorm. He kept returning to her house and beating her until she grew so angry that she made plans to murder him. Bobbette talked Deborah out of this, and Deborah fled home instead. She began...
(The entire section is 430 words.)
Chapter 20 Summary
The field of biological cell research was shaken up at a conference in Pennsylvania in 1966. Stanley Gartler, a geneticist who had previously been unknown in the field, explained to the gathering of scientists that he had found a genetic marker called G6PD-A in eighteen separate human cell lines that were commonly used in research. This had surprised him because G6PD-A was very rare, and because it was only found in African Americans. He had researched the origins of these cell lines and found that while some were purportedly from Caucasians, at least one, HeLa, came from a black woman. His best guess was that scientists had accidentally contaminated almost all of their human cell lines with HeLa cells.
Even before Gartler’s speech, scientists knew that cell lines could become contaminated if another type of cell was accidentally added to the mix. They always took precautions to ensure that cells not be overtaken by bacteria and viruses, and leading researchers had tested each major cell line to ensure that it had indeed come from the species it was supposed to. However, nobody had ever thought that one type of human cell could take over another human cell culture, nor had they suspected how strong HeLa cells were. HeLa survived and multiplied so well that if the cells were accidentally introduced to any culture, they soon took over completely.
Gartler’s discovery suggested that much recent research on human cell lines was inaccurate. It meant that scientists who thought they had been conducting research on liver or heart cells had actually been studying Henrietta’s cervix—sometimes for years. It meant that scientists who thought normal cells had become cancerous in the lab had in fact only witnessed HeLa contamination of another cell line. Whole careers’ worth of research had to be thrown out. And many of Gartler’s contaminated cell lines had come directly from the ATCC, the cell culture bank that was supposed to be the most reliable source for uncontaminated cell lines.
Many scientists did not believe Gartler. They peppered him with questions, hoping to find a mistake in his research. Many just ignored him. They went home and continued to work with the cell cultures in their possession, believing them to be non-HeLa human cell lines.
However, a few scientists took Gartler more seriously. They tested their cell lines and found that they contained...
(The entire section is 449 words.)
Chapter 21 Summary
Rebecca Skloot returned to the Holiday Inn in Baltimore on New Year’s Day in 2000. Sonny Lacks had promised to meet her, so she awaited him in the hotel lobby. He was two hours late, but he showed up. When he arrived, he grinned and joked about how persistent she was.
Sonny took Rebecca to see the person he called “the Big Kahuna”—Henrietta’s first-born son, Lawrence. When they arrived at a red brick house, Sonny laughed and said:
This is where we take scientists and reporters wanting to know about our mother. It’s where the family gangs up on them.
When Rebecca got out of the car, Sonny drove away. She hesitated on the doorstep, her mind lingering on the vague impressions she had of the Lacks men. She did not know much about them yet, but Deborah had mentioned that one of them was a murderer. Rebecca gathered her courage and knocked. When there was no answer, she simply opened the door and went in.
Inside Lawrence’s house, Rebecca found pork chops cooking on the kitchen stove. Lawrence, a huge grinning black man, appeared and asked if she was hungry. She did not ordinarily eat pork, but she said yes anyway. Lawrence seemed pleased.
For a while, Lawrence cooked and told Rebecca about his childhood. His memories were very detailed, and he told her all about tobacco farming and life in Clover, Virginia. However, he fell silent or changed the subject every time she brought up Henrietta. After a while, he admitted that he had blocked out most of his memories of his mother because they were too painful.
As Lawrence and Rebecca ate pork chops together, he recited some little facts he had heard about his mother’s cells. Then he said:
Can you tell me what my mama’s cells really did? I know they did something important, but nobody tells us nothing.
Rebecca asked if Lawrence understood what a cell was. Lawrence admitted that he did not, so she drew some diagrams and explained. Then she told him about some of the latest research scientists had completed, which allowed them to grow and replace damaged corneas so that blind people would be able to see again.
Moments later, Sonny arrived with Day, whom he had brought to introduce to Rebecca. Lawrence asked, “Did you know mama’s cells gonna make Stevie Wonder see?” Neither Day nor...
(The entire section is 699 words.)
Chapter 22 Summary
In 1970, when George Gey was 71 years old, he experienced a sudden and extreme attack of fatigue. A few days later, he learned that he had pancreatic cancer. Doctors needed to operate immediately. Gey asked the surgeons to take a sample of his tumor for his lab; he hoped this sample would give rise to a new immortal line of cells like Henrietta’s.
During Gey’s surgery, his staff stood by in his lab, ready to begin growing their boss’s tumor in culture. But when the surgeons cut into his body, they saw that the cancer was far more widespread than they had previously believed. It was inoperable, and they were afraid to cut into it at all lest they kill Gey by accident. When Gey woke up a few hours later and learned that they had not removed a cell sample, he was livid.
Gey called his friends and colleagues who were doing oncology studies and volunteered himself as a research subject for experimental cancer treatments. He flew all over the country, undergoing a series of experimental treatments, many of which caused terrible suffering. After a few months of this, he died.
About a year after Gey’s death, in 1971, two of his former colleagues published an article about his life’s work in a small medical journal for doctors. While conducting research for this article, they discovered that Henrietta Lacks’s original tumor had been misdiagnosed as a different kind of cancer than it really was. There was little consequence to this discovery; she would have received the same treatment in either case. They published this new fact in the article along with Henrietta’s real name, but only a small population of cancer researchers ever read it.
Around this time, President Richard Nixon declared war on cancer, resolving to fund studies and ultimately find a cure within five years. Researchers leapt to the challenge, but their work was hindered by the fact that they had not yet solved the HeLa contamination problem. The media eventually found out about this and began publishing scathing attacks on scientists who were wasting money conducting research on the wrong cells.
During this media storm, most newspapers referred to the woman behind HeLa as Helen Larson or Helen Lane, a name they presumably found in old articles. Eventually a biologist named J. Douglas wrote a letter to Nature in which he pointed out that the name was recorded differently...
(The entire section is 442 words.)
Chapter 23 Summary
In 1973, Bobbette Lacks, the wife of Henrietta’s son Lawrence, went to a friend’s house for lunch. The friend’s brother-in-law, who happened to work at the National Cancer Institute, commented that this was the first time he had met a real live person named Lacks. He had only heard the name Lacks because of Henrietta Lacks, the source of the HeLa cells.
Bobbette was stunned when her new acquaintance said that he worked with living cells from Henrietta Lacks, a woman who had died of cancer at Johns Hopkins Hospital in the 1950s. When Bobbette said that Henrietta was her mother-in-law, the man was excited—but Bobbette was horrified. She had grown up in Baltimore, where she had long heard stories about doctors at Johns Hopkins kidnapping black people for gruesome research. Moreover, she had just read about what was then a brand-new scandal—the Tuskegee syphilis studies and their exploitation of black patients. To Bobbette, it seemed that these terrible stories were coming true in her own family. If some mad scientist was experimenting on part of Henrietta somewhere, would he come after Henrietta’s children and grandchildren next?
Back home, Bobbette told Lawrence what she had heard. He did not know what to think, and he wondered if somebody had robbed his mother’s grave. He called Johns Hopkins hospital and said, “I’m calling about my mother, Henrietta Lacks—you got some of her alive in there.” The hospital’s receptionist had no idea what he meant and eventually hung up. He did not know who else to call.
That was the year researchers decided to develop a test for the major genetic markers in HeLa cells so that researchers could test cell lines and make sure that they were not accidentally growing HeLa when they wanted other cells instead. Victor McKusick, one of the lead researchers involved in this work, asked a younger colleague named Susan Hsu to get blood samples for genetic research from Henrietta’s family.
Susan Hsu, a recent arrival from China, called Day and asked him to gather his family so she could draw everyone’s blood. Between her strong Chinese accent and his thick southern drawl, they did not understand each other very well. Hsu assumed that the Lackses already knew all about Henrietta’s cells, whereas Day assumed that he had to do what Hsu asked because she was a doctor. Years before, when Day had agreed to allow a...
(The entire section is 699 words.)
Chapter 24 Summary
In the mid-1970s, the HeLa contamination problem once again made the cells an important news topic. Michael Rogers, a young journalist for Rolling Stone, decided to track down the Lackses and interview them. On his way to their home, he got into a car accident. Much later, Deborah would say that Henrietta’s spirit had caused this accident to protect her family.
Rogers made it through, however, and he arrived at the Lacks home expecting to ask questions. The Lackses wanted answers instead. According to Rogers,
They truly had no idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying.
Rogers did his best to explain, and he sent copies of his article when it was published. When the Lackses read it, they learned that vials of Henrietta’s cells were being sold around the world for $25. Until this point, only Deborah had been very worried about the HeLa cells. Now the male Lackses became convinced that George Gey had stolen Henrietta’s cells and used them to make money. This infuriated them.
In truth, there is no record that George Gey ever made even a penny from HeLa. His interest was in research, not in profit, and he gave HeLa away freely. However, businesses like Microbiological Associates made enormous profits off of HeLa cells, and the U.S. patent office has issued over seventeen thousand patents for inventions pertaining to HeLa.
The Lackses knew none of this; they only knew that their mother’s cells were being used for profit by people who were not their family. They wrote up a flier about the issue and began handing it out at Lawrence’s store. They did not know what else to do.
Deborah did not share her father and brothers’ interest in monetary compensation; she just wanted to know what had happened to her mother. She bought herself books and began teaching herself basic science. But she struggled to understand, and everything she read seemed horrifying. When she read about research on HeLa, she continued to imagine that her mother was somehow experiencing pain and suffering as scientists exposed the cells to diseases, radiation, and other frightening things. During this period, Deborah grew extremely annoyed that the media continued to claim the cells came from a woman named Helen...
(The entire section is 478 words.)
Chapter 25 Summary
On the other side of the country, around the time the Lackses found out about Henrietta’s cells being sold for profit, a white man named John Moore was diagnosed with leukemia. Doctors at UCLA removed his spleen, and Moore signed a consent form stating that the hospital could “dispose of [it] by cremation.” For several years after this operation, Moore flew frequently from his home in Seattle to a hospital in Los Angeles for what he believed were follow-up appointments. Eventually he got annoyed at all the traveling and informed his doctor, David Golde, that he wanted to see a physician closer to home. Golde offered to pay for Moore’s flights and lodging if he would continue coming to Los Angeles.
John Moore found it strange that a doctor would pay his travel costs, and stranger still when he was asked to sign a form giving up all rights “to any cell line or any other potential product” associated with his “blood and/or bone marrow.” The first time he saw this form, Moore gave his consent because it seemed imprudent not to do what doctors asked. The next time, his suspicions mounted, and he refused to give his agreement. Golde contacted Moore several times over the next few weeks to demand consent.
Eventually Moore hired a lawyer, who discovered that Golde had used Moore’s spleen to develop a valuable immortal cell line named Mo. Moore found it “dehumanizing” to discover that a part of his body was being grown and sold “like a piece of meat.” His lawyer soon found that the commercial value of the Mo line was about $3 billion.
John Moore’s spleen cells were unusually valuable because they carried a rare virus and produced special proteins that were useful to researchers. Most people’s cells would not be worth anything—but if Moore had known that his had value, he could have sold his tissues himself. A few other unusual patients have discovered this type of information and sold their blood and other bodily products for profit. It was too late for Moore to do this, however, because Golde had already patented the Mo cells.
In 1984, Moore filed a lawsuit, claiming that his bodily tissues were his own property, and that Golde had stolen them. A series of rulings and appeals about his case launched an intense national debate. One of the courts threw out Moore’s lawsuit, saying that the existence of the HeLa cells proved that patients...
(The entire section is 515 words.)
Chapter 26 Summary
Life went on for the Lacks family. Deborah remarried. Lawrence went on running his store. Sonny got arrested for selling drugs. Zakariyya, the youngest son formerly known as Joe, was released from prison early, but he still struggled with anger issues and found it difficult to hold down a job.
Zakariyya lived on the streets, refusing all offers of financial help from his father. Zakariyya blamed Day for the HeLa disaster, and also for the years of abuse he suffered in childhood. To earn money and a place to sleep, Zakariyya ended up enlisting himself as a voluntary research subject at Johns Hopkins.
In 1985, the family learned of a newly published book about HeLa contamination called A Conspiracy of Cells: One Woman’s Medical Legacy and the Scandal It Caused. Deborah got a copy and, flipping through it, soon found her mother’s picture. She studied that chapter and was horrified to find that her mother’s medical records were quoted in detail, revealing private information about Henrietta’s body and life. The author, Michael Gold, also included a ghastly description of Henrietta’s autopsy, describing “grayish white tumor globules” that “filled the corpse.”
Deborah was horrified at the invasion of her mother’s privacy, and she could not shake this new, detailed mental image of her mother’s tumors. Until now, she had been more sad and confused than angry; now she blamed the Johns Hopkins doctors for violating her mother’s privacy.
Years later, Rebecca Skloot tried to find out who gave Michael Gold those medical records, and why. It was unusual and unethical, but not illegal, to release a private person’s medical information in that way. It was unusual and unethical, but not illegal, for Michael Gold to publish them without seeking the family’s consent. When Rebecca tracked down Michael Gold and the Johns Hopkins doctors he interviewed, the doctors said they did not remember giving him Henrietta’s records. Gold, for his part, said that he did not remember who had had handed them over. He claimed that he had tried to call the Lacks family for consent but failed to find current phone numbers and addresses. He added:
And to be honest, the family wasn’t really my focus…I just thought [the records] might make some interesting color for the scientific story.
In any case, the...
(The entire section is 422 words.)
Chapter 27 Summary
In 1984, a scientist finally found a probable cause for Henrietta’s cancer. He discovered a new strain of a sexually transmitted disease called Human Papilloma Virus (HPV) and found that HeLa cells tested positive for it. This strain of HPV switched off a gene in Henrietta’s chromosomes that normally suppresses tumor growth. Research into this and other strains of HPV, which affects about 90 percent of all adults who are sexually active, increased understanding of cervical cancer and also led to the development of an HPV vaccine.
However, no scientist has ever been able to explain why Henrietta’s cancer was so virulent, nor why it grew so well in culture. Since the 1950s, scientific advances have made it easier to grow human cells in a laboratory, but Henrietta’s somehow grew well without much help. Henrietta’s family members tend to explain this phenomenon as the work of God or the intervention of spirits. Her cousin Sadie once even suggested that it was caused by some force from outer space. She laughed at herself for saying something so ridiculous, but she added:
Everything just go through your mind, you know? How else you gonna explain them cells growin like they do?
The 1980s brought new discoveries and ethical fights involving HeLa. Researchers made changes to the DNA of some of Henrietta’s cells in order to infect them with HIV, which normally infects only blood cells. This effort helped the fight against AIDS but also led to a lawsuit by activists who considered it immoral and irresponsible to change the DNA structure of any human cell.
In a strange twist of the HeLa cells’ story, two researchers at the University of Chicago noted that HeLa had undergone changes while reproducing in culture. All cells undergo changes over time, so these researchers suggested that HeLa cells were not human anymore. However, few scientists took this point seriously. One prominent researcher, Robert Stevenson, mocked the suggestion:
Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you disassociate your materials from the people they came from.
Scientists also discovered why cancer cells can keep growing and replicating so much longer than normal cells. For decades, they had known that normal...
(The entire section is 447 words.)
Chapter 28 Summary
In the 1990s, Henrietta finally began to receive respectful attention for her contribution to medical science. A BBC producer heard about her story and began to shoot a documentary about her life. Around that same time, the scientist Roland Patillo hosted a medical conference in Henrietta’s honor and invited the family to make an appearance. Deborah and the other Lackses were pleased by these developments.
The BBC documentary brought Henrietta’s story to the attention of Courtney Speed, the grocery store owner in Turner Station. With the help of a sociologist named Barbary Wyche, Speed began efforts to build a Henrietta Lacks museum, complete with a wax statue of her. To raise money, Speed began selling T-shirts and other memorabilia in Henrietta’s honor. This effort began with no input from the Lackses, and Deborah was annoyed when she found out:
The family don’t need no museum, and they definitely don’t need no wax Henrietta…If anybody collecting money for anything, it should be Henrietta children collecting money for going to the doctor.
Nevertheless, Speed and Wyche managed to access valuable information about Henrietta’s cells. They invited Mary Kubicek, George Gey’s former assistant, to come to Turner Station to answer questions about her. The attendees at this meeting, mainly unconnected people from the neighborhood, accused Gey of stealing the cells and selling them for profit. Mary explains that Gey made no money off of the cells, but some attendees do not believe her.
During this period, officials at Johns Hopkins revisited Henrietta’s story as well. Officially, the hospital denied any obligation, monetary or otherwise, toward the Lacks family or the museum effort. However, a small group of people at Johns Hopkins began holding unofficial meetings to explore ideas for honoring Henrietta and her family in some way.
Then Deborah met a man named Dr. Sir Lord Keenan Kester Cofield, “the cousin of Deborah’s husband’s former stepdaughter, or something like that.” Cofield approached Deborah claiming to be a lawyer and a doctor, and he seemed to know how to access information about Henrietta. He promised to get money for the Lackses from Johns Hopkins, and he charged no upfront fee for his work. Deborah hired him, and he began digging through Henrietta’s records.
As it turned...
(The entire section is 545 words.)
Chapter 29 Summary
Rebecca Skloot obtained Deborah’s phone number from Roland Pattillo just a few weeks after Deborah’s panic attack. Deborah spoke with Rebecca once on the phone, then got spooked and refused to do an interview for almost a year. During that time, Rebecca pursued interviews with other family members but kept trying to get through to Deborah.
About ten months after the two women first spoke, Deborah called Rebecca and said she would do an interview under two conditions. First, Rebecca had to promise she would get Henrietta’s name right in her book. Second, Rebecca must research Elsie Lacks and include Elsie’s story in her book. When Rebecca agreed to both conditions, Deborah said, “Get ready, girl…You got no idea what you gettin yourself into.”
Eventually the two women met at a bed and breakfast where Rebecca was staying in Baltimore. Rebecca began by giving Deborah a framed photograph of one of Henrietta’s cells, a gift from Christoph Lengauer, a Johns Hopkins researcher who had been taking pictures of the cells using dyes and ultraviolet light. Scientists stained the cells with dyes to gather information, but to a non-scientist, the picture simply looked beautiful. Deborah was thrilled, but she also said:
You know what’s weird? The world got more pictures of my mother cells than it do of her. I guess that’s why nobody knows who she is. Only thing left of her is them cells.
Deborah showed Rebecca all of the information she had gathered about Henrietta, and Rebecca soon realized that Deborah had misunderstood a great deal. When Deborah read about HeLa cell cloning, she concluded that scientists had made women that looked like Henrietta. She showed Rebecca video tapes of The Clone and Jurassic Park, which she had watched partly because she wanted to understand cloning better. She knew these movies were fiction, but she did not have a firm grasp on what was and was not possible.
For three days, Deborah and Rebecca talked constantly. Deborah told Rebecca everything that was on her mind, whether it had to do with Henrietta or not, and Rebecca listened and took notes. One day Rebecca found a manila envelope among Deborah's things and picked it up casually. “Are these your mother’s medical records?” she asked.
Without warning, Deborah freaked out and snatched the envelope...
(The entire section is 439 words.)
Chapter 30 Summary
When Deborah returned to Rebecca's hotel the following day, she did not acknowledge the fact that she had run out in a panic the night before. Instead she suggested a visit to Zakariyya. Rebecca was hesitant; she knew that Zakariyya had violent tendencies, and that he was very angry about HeLa. Deborah said she was “pretty sure” he was ready to talk. She advised Rebecca to be respectful and to pronounce Zakarriya’s name zuh-CAR-ee-uh, as he preferred.
At the assisted-living facility where Zakarriya was allowed to live due to hearing and vision problems, he at first refused to speak. He sat on a bench outside, eating ice cream and reading advertisements, as if Rebecca was not even there. Then he made her sit beside him while he read an article she had written for Johns Hopkins Magazine.
When Zakarriya finally began to speak, it soon became clear that he was as full of rage as people had always claimed. Everything he said was angry. He complained about the HeLa researchers and their disrespect on his family:
Those fools come take blood from us sayin they need to run tests and not tell us that all these years they done profitized off of [Henrietta]? That’s like hanging a sign on our backs saying, "I’m a sucker, kick me in the butt."
He went on to complain that the family lacked medical insurance in spite of everything:
Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it.
Above all, it bothered him that many writers said Henrietta "donated" her cells to science, when in fact her cells were taken without her knowledge or permission.
In spite of his angry demeanor, it was clear that Zakarriya had tender feelings for his family. He displayed pictures of his mother and sister in his apartment, and he and Deborah seemed to care deeply for one another. Deborah gave him the framed photograph of Henrietta’s cells. She explained that it was a gift that she wanted to pass on to him, and his eyes welled up with tears. Rebecca added that she was going to see the cells in Christoph Lengauer’s lab, and that Zakarriya could come along if he wanted. He agreed,...
(The entire section is 428 words.)
Chapter 31 Summary
Soon after her first long visit with Rebecca, Deborah was advised by a stranger, a black man, who said she should not talk to a white reporter about Henrietta. He said that only a black person could be trusted to tell the story properly. He nearly convinced Deborah, but soon she decided that he was wrong:
Racism! Racism! …We all black and white and everything else—this isn’t a race thing. There’s two sides to the story, and that’s what we want to bring out…It’s not about punish the doctors or slander the hospital. I don’t want that.
Deborah remained skittish, but she kept granting Rebecca interviews. In exchange, Rebecca promised full disclosure on anything she found about Henrietta Lacks. She sent Deborah every scrap of information she found, along with clear labels explaining what it all meant and whether it was fact or fiction. She also promised to set up a scholarship fund for Henreitta's descendants if the book ever sold.
A friendship soon blossomed between Deborah and Rebecca. Rebecca invited Deborah along on research trips and helped her to set up a computer with Internet access at home. As Deborah began to hunt for information about Henrietta herself, she often called Rebecca in the middle of the night, panicked about articles she found. She could not sleep and so she began taking Ambien, a sleeping pill, which made her fuzzy-headed. Her erratic behavior scared her grandson, who insisted on moving into her house to watch over her.
Eventually Deborah began to learn more about Henrietta’s cells, and the panicked nighttime phone calls ceased. Deborah filled notebooks with information on cells, cancer, legal terms, and so on. She researched the problematic history of medical testing around the world, and she complained to Rebecca when she found insulting references to Henrietta Lacks in the media.
One day, Deborah received a call from a doctor asking her to speak at a large medical conference about HeLa. At first, Deborah was afraid that this was just another attempt to exploit or ridicule her, but Rebecca did some research on her behalf and found that it was a legitimate conference. Deborah agreed to go.
It was important to Deborah to learn as much as possible before appearing at the conference, so she asked Rebecca to take her to visit Cristoph Lengauer’s lab at Johns Hopkins to...
(The entire section is 444 words.)
Chapter 32 Summary
Rebecca invited the whole Lacks family to tour Cristoph Lengauer’s cancer lab at Johns Hopkins, but only Deborah and Zakarriya agreed to go. Day was ill and Sonny had to work. Lawrence, for his part, was fed up with hearing about HeLa.
When Christoph welcomed Deborah and Zakarriya, he acknowledged how difficult it must be for them to come to the hospital given all they went through. He took them first to a freezer room to show how HeLa cells were stored. He explained that researchers had to be careful to prevent HeLa from contaminating other cell cultures, and he was pleasantly surprised when Deborah knew a bit about this issue. He commented that the contamination problem had been “poetic justice” because it cost millions of dollars. Deborah joked back:
My mother was just getting back at scientists for keepin all them secrets from the family…You don’t mess with Henrietta—she’ll sic HeLa on your ass!
Next, Cristoph led the way to a laboratory, where he displayed a magnified image of living HeLa cells on a screen. Answering the Lackses' questions, he explained that only Henrietta’s cancer cells were alive, not her regular cells. He also told them about the difference between cells and DNA. Deborah knew that DNA was passed from parents to children, so it frightened her to hear that Henrietta’s cancer came from a DNA mistake. Cristoph explained that this particular DNA mistake came from a virus and thus would not have been passed on to her children. Deborah exclaimed, “Now you tell me after all these years!...Thank God, because I was wonderin!”
Near the end of this conversation, Cristoph spotted two cells in the process of dividing. He pointed them out, and both Deborah and Zakarriya watched in fascination. They were amazed, as if they were witnessing a miracle.
When the conversation turned to the fact that the Lackses had never before been invited to see HeLa cells, Cristoph said, “Yeah, Hopkins pretty much screwed up, I think.” Deborah and Zakarriya stared at him, amazed to hear a Johns Hopkins scientist admitting such a gaffe. Cristoph told them that their mother was an important figure in history and that she deserved recognition. He also said that, in his opinion, the family should receive a percentage of the profits from the sale of HeLa cells.
Zakarriya remained silent...
(The entire section is 441 words.)
Chapter 33 Summary
The day after seeing Henrietta’s cells, Rebecca and Deborah set out to learn what had happened to Elsie Lacks. They drove to the Crownsville Hospital Center, the site of Elsie’s death. The campus was beautiful and well-groomed, but the main building seemed deserted. Rebecca and Deborah made their way through the empty hallways until they found a room labeled “Medical Records.” Inside, there were only empty shelves.
The women wandered the hallways, looking for answers. Deborah eventually got frustrated and began shouting up and down the halls, demanding to know where to find medical records. A few people popped out of offices and pointed in the right direction.
Eventually Rebecca and Deborah found Paul Lurz, “a tall man with a thick white Santa Claus beard.” When he heard that Deborah wanted information about Elsie Lacks, a mental patient who had died at Crownsville in 1955, he looked grave. The hospital had no official archivist, and he had only managed to preserve a few records. Much of the old paperwork had been destroyed due to asbestos contamination. But this lack of information was not the only thing that worried Lurz. He said:
I’m afraid Crownsville wasn’t a very nice place to be back then…You have to be prepared…Sometimes learning can be as painful as not knowing.
Deborah said that she wanted to learn as much as possible, no matter how terrible it was. Lurz dug through his personal archives for the few leather-bound books he had managed to save. In one of them, they found Elsie’s autopsy report. With it, he found a gruesome picture: it showed Elsie looking terrified, her face bruised and swollen, with a pair of white hands gripping her by the neck.
Along with the records, Rebecca and Deborah found a newspaper article stating that the hospital had grown extremely overcrowded around the time Elsie died. Patients were crammed into rooms, typically forced to share beds or do without beds entirely, sometimes left alone with no toilet facilities except drains in the floors. Patients of all ages and sexes were housed together, even though some of them had a history of violence and sexual assault. There had been only one doctor for every 225 patients.
As Deborah had always feared, patients at Crownsville were used without consent as subjects for medical research. There were no specific...
(The entire section is 538 words.)
Chapter 34 Summary
After finding out about Elsie, Deborah and Rebecca drove to Clover, Virginia and checked into a hotel. Until this point, Deborah had never allowed Rebecca to look at Henrietta’s medical records, but now she handed them over. She said she was going to sleep, and she went off to her own room.
A few minutes later, Deborah knocked on the door of Rebecca’s room and demanded that they read the records together. The two women sat up into the night as Rebecca sorted the papers. They were crumpled, stained, and out of order. Other legal documents were mixed in among them, as were some of Deborah’s poems.
As Rebecca worked on sorting information, Deborah sat looking at her sister’s picture and autopsy report. Whenever Rebecca saw something interesting among the medical records, she read it aloud. There were records from Henrietta’s final check-up before Deborah’s birth, and notes from Henrietta’s first trips to the hospital after her cancer diagnosis.
During this long evening, Rebecca repeatedly asked for her own copy of Henrietta's medical records, or at least for Deborah to get herself a new set, organized in order, from Johns Hopkins. Deborah repeatedly refused, and it clearly bothered her when Rebecca refused to stop asking.
Every now and then during the evening, Deborah looked up the definitions of words from Elsie’s autopsy report. One particular word annoyed her, and she demanded that Rebecca not include it in the book. Rebecca agreed, smiling at Deborah’s protectiveness. This smile made Deborah suspicious that Rebecca was hiding something. They got into a strange argument, and Deborah—overcome by the emotions of the day—grabbed Rebecca and slammed her into a wall.
Until now, Rebecca had always been extremely patient with the Lackses, but now she told Deborah to “chill the fuck out.” Somehow, this angry outburst broke the tension, and Deborah laughed. She said she was glad Rebecca was human enough to get so angry, and she explained that she had been sensitive about the medical records ever since Cofield’s lawsuit. The family no longer had anything of Henrietta’s except medical records and a Bible; it did not feel right to let anyone else have them.
Deborah went back to her room after that, but she knocked on Rebecca’s door several more times in the night. The emotions of the day were too much for both of them....
(The entire section is 434 words.)
Chapter 35 Summary
Next, Rebecca and Deborah drove Clover, Virginia to visit Henrietta’s sister, Gladys. When they arrived, Gladys sat, wearing nothing but a thin nightgown, in a wheelchair next to a hot wood stove. Her dying husband was in the next room, moaning in his bed. Deborah, clearly agitated and covered in hives, made a halting speech to Gladys about everything she had learned.
Soon Gary, Glady’s son and Deborah’s cousin, came into the house. He saw the hives on Deborah’s face and watched her pacing around the room. He looked to Rebecca, who explained that the information about Elsie had upset Deborah badly. Gary was close to Deborah, and he understood her feelings better than most of the family, so he seemed sympathetic.
Gary’s nickname was Gary The Disciple. He had spent his youth drinking and chasing women, but this led to heart problems. When he was about thirty, ill health forced him to up his hard living, so he devoted his life to God instead. He encouraged Deborah to relax herself and trust in the Lord, but Deborah could not. She kept pacing back and forth, repeatedly reciting everything she knew or had heard regarding Elsie's hospitalization and Henrietta’s cells.
When reasoning did not seem to help Deborah, Gary conducted a spontaneous spiritual healing ritual in Glady’s living room. First he looked “vacant,” and then “his upper body seized like he’d been electrocuted.” He approached Deborah, shaking and shouting, and began to pray for the Lord to heal her and take away her pain regarding Henrietta:
We need your help liftin the BURDEN of them cells from this woman! Lift this burden, Lord, and take it away, we don’t NEED it!
Deborah’s body began shaking all over, and she prayed with Gary, repeating his words and thanking God for helping her. Then Gary demanded that God take Deborah’s burdens away and give them to Rebecca to carry.
As all this was happening, Rebecca sat as silently as possible, watching in amazement and scribbling notes. She reflected afterward:
In any other circumstance I might have thought the whole thing was crazy. But what was happening between Gary and Deborah at that moment was the furthest thing from crazy I’d seen all day. As I watched, all I could think was, Oh, my god…I did this to her.
(The entire section is 440 words.)
Chapter 36 Summary
The day after Gary’s faith healing, Deborah felt a good deal better. The hives on her face were not quite so bad, but they had not disappeared completely. Her eyes were still uncomfortably swollen. She decided that she should see her doctor, so she set off to drive back to Baltimore.
Meanwhile, Rebecca stayed in Clover. She did not fully understand what she had witnessed the day before, and she wanted to talk to Gary about it. She found him at home changing a light bulb. When she walked in, she recited the words from a hymn he had sung during his spontaneous faith healing. When she confessed that she could not get the song out of her head, he laughed and said, “I know you don’t like to think about it, but that’s the Lord telling you something.”
Gary retrieved a pretty blue Bible and asked Rebecca to read some passages he had marked. She had never before read aloud from the Bible, but she did as he asked, reading a few lines about faith as the path to eternal life. The passage went on to describe the beauty of heavenly creatures and they reminded Rebecca of how awestruck Deborah had been at the sight of Henrietta’s beautiful cells.
Rebecca realized then that to Gary, Deborah, and the rest of the Lackses, Henrietta Lacks was quite literally still alive. Her cells had survived in culture because she had been “chosen” as “an angel.” Henrietta’s cancer cells were immortal not because of the quirks of medical science, but because of a conscious choice of God’s. Rebecca explains:
If you believe the Bible is the literal truth, the immortality of Henrietta’s cells makes perfect sense. Of course they were growing and surviving decades after her death, of course they floated through the air, and of course they’d led to cures for diseases…Angels are like that.
This explanation for Henrietta’s immortality was “more concrete” to the Lackses than the scientific explanation regarding HPV and DNA and telomeres.
Gary smiled at the look of amazement on Rebecca’s face, and then warned her that she might soon convert to Christianity. She disagreed, fervently, making the two of them laugh together. He read her one more sentence from the Bible: “Why do you who are here find it impossible to believe that God raises the dead?” Then he pressed the Bible into her hands...
(The entire section is 412 words.)
Chapter 37 Summary
At the doctor’s office, Deborah learned that her blood pressure and blood sugar were so high they had almost caused a stroke. Erratic behavior, hives, and disjointed speech are all symptoms of these conditions, so these health problems helped to explain her behavior on her research trip. The doctor told Deborah to avoid stress at all cost. For the next several months, she did so.
Rebecca continued her research alone and, for some time, shared only the happy bits with Deborah. Deborah still wanted to speak at the upcoming medical conference in Washington, D.C. and with her doctor’s blessing, she slowly began to prepare for this trip.
Unfortunately, Deborah's personal life brought her a great deal of additional stress. Her son Alfred was in prison for robbery and other crimes, and one of Lawrence’s sons had recently been arrested as well. Also, Lawrence and Zakariyyah were both still angry that they had not received any money for HeLa.
Amid these problems came the September 11th attacks, which stopped one of Rebecca’s research trips and ultimately resulted in the cancellation of the medical conference where Deborah was supposed to speak. This was a blow to Deborah, who went to church to pray about it.
As she sat in her pew that day, Deborah suddenly lost the use of her arm. She was having a stroke. She might have died except for the quick thinking of her nine-year-old grandson, Davon, who noticed what was happening and quickly got the car started so Deborah’s husband, Pullum, could drive her to the hospital. Davon sat in the back next to Deborah throughout the drive, keeping her awake by slapping her whenever she closed her eyes. Later, the paramedics said he had probably saved her life.
Deborah ultimately recovered fully from her stroke. With her recovery, she developed a new, more peaceful attitude toward life. She wanted to go back to school, but she did not ultimately have enough money. She decided to focus on her grandchildren, making sure that they would get an education.
Two months after the stroke, Rebecca accompanied Deborah to a church service to see the baptism of Sonny’s newest granddaughter, JaBrea. The service was led by Pullum, who abruptly called Rebecca to the pulpit in the middle of the service. Rebecca had never attended church before, and she tried...
(The entire section is 543 words.)
Chapter 38 Summary
In 2009, Rebecca Skloot drove to Clover for a visit. She thought the road seemed longer than she remembered, and then she realized that she was driving past the Post Office. She stopped the car and stared in surprise at a field full of rubble that had once been downtown Clover. She picked up some of the pieces, with the intention to give them to Deborah.
In the years since Rebecca had completed her research for The Immortal Life of Henrietta Lacks, it had begun to feel “like everything related to Henrietta’s history was vanishing.” Gary, Day, and Cootie had already died—and now the whole town of Clover had disappeared, too.
Life went on for Deborah’s children, following the same paths as before, running into both legal and medical trouble. Sonny had a quintuple bypass surgery. Just before it began, the doctor thanked him for his mother’s contribution to medicine. After the surgery was over, Sonny had $125,000 of medical debt.
Deborah and Pullum eventually divorced and Deborah moved into an assisted living facility. For years she worked full-time for her daughter, but when she could not handle the activity anymore, she had to quit. When her divorce went through, her entire income was $723 per month in disability plus $10 per month in food stamps.
In 2009, when Rebecca told Deborah the book was finally finished, Deborah asked Rebecca to come for a visit and read the manuscript aloud. Rebecca promised to do so and made several calls to arrange a time. When Deborah never returned these calls, Rebecca called Sonny instead. He told Rebecca that he had been looking for her phone number; Deborah had passed away.
Deborah had been happy when she died. Several of Henrietta’s great-grandchildren, inspired by the HeLa story, had applied themselves to education, especially in the sciences. Lawrence’s granddaughter, Erika, was attending graduate school to study psychology. Davon, Deborah’s grandson, was now seventeen. He was on track to finish high school, and he planned to go to college as well.
After hearing about her friend’s death, Rebecca spent hours looking at Deborah’s pictures and reflecting on their last visit together. On that occasion, they had watched movies with Davon and talked about Henrietta’s story. Deborah also had mentioned that she would not want to live forever, because then everyone she knew would die...
(The entire section is 432 words.)
In 1951, it was not illegal for doctors to take Henrietta’s cells for research without consent. By 1999, when The Immortal Live of Henrietta Lacks was published, there was still no clear law requiring that patients give consent for the scientific use of their own bodily tissues. In fact, human tissues are still constantly collected and used for research without patients’ knowledge.
“Today most Americans have their tissue on file somewhere,” Rebecca Skloot writes. Nearly any time patients give blood or have any bodily tissue removed, the excess matter is stored away in tissue banks. Very little of this material has any financial worth of its own, but all of the material in combination is extremely useful for medical research.
The debate about the use of human tissue in research is ongoing. Skloot notes that:
people often have a strong sense of ownership when it comes to their bodies…But a feeling of ownership doesn’t hold up in court.
Interestingly, most patients who learn about the use of their tissues in research want information and the right to influence how it is used, but most have not demanded monetary compensation. A few individuals and groups have managed to remove their own or their families’ tissues from research situations, but no clear ethical standards have ever been created.
Rebecca points out that it is not exactly bad that medical companies make money off of biological materials. Money enables these companies, which serve a vital function, to exist. She writes, “Like it or not, we live in a market-driven society, and science is part of that market.” However, she suggests that the thorny ethical issues regarding money, human tissues, and human rights need further sorting out.
Few patients have ever attempted to benefit financially from the scientific use of their tissues. John Moore, who lost his lawsuit attempting to gain benefit from the valuable cell line created from his cancerous spleen, died in 2001. The judges who struck down his lawsuit said that research would be hindered if patients had a right to claim ownership of their own cells. Ironically, this judgment has led medical companies to commercialize biological materials more aggressively—sometimes so aggressively that they end up hindering medical research.
The Lackses, for their part, have never filed a suit for...
(The entire section is 469 words.)