The Immortal Life of Henrietta Lacks Summary

Rebecca Skloot

The Immortal Life of Henrietta Lacks Summary

Journalist Rebecca Skloot tells the story of Henrietta Lacks, an African American woman who was diagnosed with cervical cancer after the birth of her fifth child. Without her knowledge or consent, her doctors harvested her cells and used them to create HeLa, an immortal line of cells that led to many groundbreaking scientific discoveries.

  • Following Henrietta's death in 1951, her husband Day was left to care for the children. Their eldest daughter, Elsie, was placed in an assisted living facility because of her mental handicaps. The eldest son, Lawrence, dropped out of school to support his family and was later drafted in the Vietnam War.
  • Henrietta's other three children, Sonny, Deborah, and Joe, were tortured by her cousin Ethel, who came to help Day with the kids. Sonny joined the Air Force but later fell into drugs. Joe killed a man and converted to Islam in prison, changing his name to Zakariyya. Deborah got pregnant at age sixteen and married her boyfriend Cheetah, only to divorce him soon after.
  • When Skloot began researching Henrietta Lacks, she discovered that the Lacks family didn't understand what Henrietta's cells had done. The doctors never told them, and Skloot had to explain the science. With Deborah's help, Skloot was able to piece together Henrietta's story. The Immortal Life of Henrietta Lacks became a national bestseller.

Summary

Rebecca Skloot first heard of Henrietta Lacks in a biology class she took to fulfill a requirement for her high school diploma. Her professor didn't know anything about Henrietta Lacks, and neither did anyone else, Skloot learned. While studying toward an MFA in Nonfiction writing, Skloot decided to try writing the story of Henrietta Lacks. She jumps back in forth in time to tell this story, setting the book variously in the 1950s and the 2000s, with many digressions in between to explore how HeLa cells changed science forever.

1920-1950

Henrietta Lacks was born in 1920, the eighth of ten children in a poor African American family. In 1924, Henrietta's mother died. Her father moved the family to Clover, Virginia, where he divvied up the children between relatives. Henrietta went to live with her grandfather Tommy Lacks in a small four-room cabin affectionately known as "home-house." Henrietta shared a bed with her cousin Day Lacks, with whom she pursued a sexual relationship. At the age of fourteen, Henrietta gave birth to her first child, Lawrence. Four years later, Henrietta had Lucile, nicknamed Elsie, an epileptic with severe mental handicaps. Henrietta and Day attempted to raise Elsie on their own without any form of medical assistance, later adding a third child, Sonny, to their family.

1951-1999

In 1951, Henrietta gave birth to her fourth child, a daughter, Deborah. Shortly after the birth, she felt a pain in her womb and suspected that something was wrong. Her friends and cousins advised her to talk to a doctor, but Henrietta had a deep distrust of the medical profession and hated going to Johns Hopkins, where, having little more than a sixth grade education, she couldn't really understand what was going on and felt as though her doctors were speaking another language. Henrietta didn't follow up on that pain until after the birth of her fifth child, Joe. After finding a lump near her cervix, she at last went to a doctor. Howard Jones, a gynecologist at Johns Hopkins, confirmed there was indeed a tumor the size of a grape on Henrietta's cervix. He recommended radium to shrink the tumor. Jones and his boss Richard TeLinde were interested in developing new treatments for cancer, so they took samples of both Henrietta's healthy and cancerous cells—without bothering to get consent, because, back then, doctors weren't required to get consent to harvest cells from patients. Without Henrietta's knowledge or approval, TeLinde enlisted the help of George Gey, a visionary scientist who wanted to create a line of immortal cells. Thus far, Gey had failed; but that all changed when Henrietta Lacks' cells arrived in Gey's lab.

While Henrietta was undergoing cancer treatments, Gey and his assistant Mary Kubicek went about growing Henrietta's cells in the lab. Having failed so many times, Mary didn't have high hopes—but then the cancer cells started dividing. And dividing, and dividing. Gey had succeeded in creating the first and most important line of immortal cells in history: HeLa. The key to their success, as it turned out, was George Gey's wife Margaret: her sterilization techniques, inspired by her extensive training as a surgical nurse, provided the clean research equipment necessary to grow the cells. She and Gey had also developed a recipe for feeding the cells, using the plasma of chickens, puree of calf fetuses, special salts, and the blood from human umbilical cords. This winning combination resulted in what is now considered one of the greatest scientific breakthroughs of all time. HeLa cells would go on to be used in thousands of scientific experiments, which in turn led to major discoveries in the fields of oncology, genetics, and beyond. All without Henrietta ever knowing her cells were harvested.

Meanwhile, Henrietta underwent radium treatments to reduce the size of the mass. Soon, her doctor recommended daily X-ray treatments at Johns Hopkins. Henrietta, who had hidden her illness prior to this, finally admitted to her family that she had cancer. Her cousin Margaret lived within walking distance of Johns Hopkins, and after her treatments Henrietta walked over to Margaret's to wait for Day to pick her up after work. Henrietta was often so exhausted after being subjected to the X-rays that she did nothing but sleep at Margaret's house. Her stomach swelled, and she suffered great pain as tumors massed in her abdomen right under her doctors' noses. After her radiation treatment cycle ended, her doctors declared her free of cancer, only to rescind that statement a few weeks later after finding an enormous tumor in her abdomen. Henrietta died in 1951. After her death, Gey requested an autopsy on the body so he could collect more samples. Day, unaware what he was signing away, gave doctors consent to perform a partial autopsy. Day was told that what they learned from the autopsy could protect his family if anyone else developed cancer. That was the full extent of the information provided to Day about Henrietta's cells.

The Lackses, unaware of Henrietta's contribution to science, went on with their lives, which proved hard and bitter. Day Lacks worked two jobs to support his children. Elsie had been sent to a special assisted living facility around the same time Henrietta got sick, so there were only four kids to feed now—but that was still too much. Lawrence, the eldest, dropped out of high school to get a job, but he was soon drafted into the Army and sent to fight in the Vietnam War. In his absence, Day called on Henrietta's cousin Ethel and Ethel's husband Galen to care for the remaining three children. For some reason, Ethel hated Henrietta, and she took it out on the Lacks children through years of abuse and torture. Deborah, Sonny, and Joe were worked to the bone and often whipped. Ethel locked the fridge and cabinets so the starved children couldn't steal food. Joe got the worst of it and developed anger issues. Galen sexually abused Deborah for years. Somehow, Lawrence didn't learn about this abuse until years after his return from the Vietnam War. He had moved into his own house by then, and he didn't witness the abuse firsthand. Soon after marrying Bobbette, Lawrence took his siblings from Ethel and began raising them himself.

Sonny did okay for himself at first. He graduated high school and joined the Air Force. He later fell into drugs and was arrested. Deborah, in recovery from the sexual abuse she suffered at Galen's hands, began dating Cheetah, with whom she bore a child. Deborah was just sixteen at the time, and her sister-in-law, Bobbette, insisted she finish high school despite being pregnant. Only a few years later, Deborah and Cheetah married and had a second child. Cheetah soon fell into drugs, however, and became physically abusive. Deborah, who had learned how to stand up for herself in the years since Galen abused her, fought right back, once even pushing Cheetah down the stairs in self-defense. Instead of murdering Cheetah as she planned, Deborah divorced him and became a single mother. Meanwhile, her little brother Joe struggled with emotional problems after years of Ethel's abuse. He was an angry kid, always getting into fights and never backing down. He briefly joined the military, but his superior officers kicked him out after he started one too many fights. Upon his return to Clover, Virginia, Joe quickly came into conflict with a guy named Ivy. One night, Joe stabbed and killed Ivy. In prison, he was held in solitary for a long time. When Joe finally calmed down, he converted to Islam and changed his name to Zakariyya. He had trouble readjusting to society after his release. He couldn't get a job, and to make money he was forced to volunteer as a subject in medical experiments at Johns Hopkins.

Meanwhile, important battles were being waged in the scientific world over medical ethics. Excited by his discovery, Gey released HeLa cells to the world, where enterprising researchers and scientists immediately began producing and selling them in order to make a profit. In 1952, Gey provided the cells Jonas Salk used to test his polio vaccine. Tuskegee Institute became a factory for production of HeLa cells even as researchers there conducted the infamous Tuskegee syphilis studies, which were later cited as examples of unethical experimentation on humans. Curious journalists contacted Gey, wondering about the source of the HeLa cells. His colleagues debated whether to release Henrietta's name. Eventually, they told journalists that her name was Helen Lane or Helen L. or some variant of these. This sparked confusion as to Henrietta's true identity that remained until Skloot published her book. In the meantime, medical research, both ethical and not, was conducted with HeLa cells.

In the 1950s, researcher Chester Southam began injecting cancer cells into subjects to test his theory that researchers could infect themselves with cancer from HeLa cells. Three Jewish doctors pointed out the unethical (though not yet illegal) nature of the experiments, which they compared to medical experiments performed on Jews by Nazis during the Holocaust. After the Jewish doctors resigned in protest, Southam's experiments sparked a media scandal. The National Institute of Health decided to issue a set of rules for all researchers to follow. It required that doctors attain informed consent from their patients prior to collecting tissue samples or conducting experiments. In the 1960s, when HeLa cells were near ubiquitous in medical research, some doctors began to worry about contamination of cell lines. Respected scientists joined together to form the American Type Culture Collection (ATCC), which functioned as a bank for cell lines deemed pure by said scientists. In 1966, geneticist Stanley Gartler proved that most cell lines, including those in the ATCC, were in fact contaminated with HeLa cells, whose aggressive growth quickly overtook that of other cells. A decade's worth of medical research had to be thrown out.

In 1970, Gey was diagnosed with pancreatic cancer. He died after three grueling months of experimental cancer treatments. Around that time, Nixon declared war on cancer, and the media got wind of the HeLa contamination problem. Only then did the Lacks family learn about HeLa cells. A reporter from Rolling Stone contacted them for an interview, but the Lackses, ignorant of the science behind HeLa cells, remained confused about Henrietta's role. Until Skloot came along to correct her, Deborah believed that scientists had cloned Henrietta herself, not her cells, and were experimenting on her and causing her pain. The Lackses were angry, confused, and worried about their own health. Day claimed the doctors tricked him into signing away his family's rights to the cells so the doctors themselves could get rich. He and the men were bitter about the money, and everyone was afraid of getting cancer. Doctors from Johns Hopkins drew blood from the Lackses, who believed they were being tested for cancer—they weren't, and they waited in vain for the results. Frustrated and confused, Deborah tried to study the science of the HeLa cells, but she couldn't understand the books she read. In 1984, a man named John Moore filed a lawsuit after learning that his doctor had harvested cells from his cancer-ridden pancreas, grown them in a lab, patented them, and sold them as the Mo line of cells, which was worth $3 billion at the time of the lawsuit. Moore lost. The court ruled that his doctor had every right to create an immortal cell line. The Lackses, clear on the other side of the country, didn't know about this lawsuit and never filed one of their own.

2000-Present

In 1999, Rebecca Skloot got Deborah's number from Roland Pattillo, an African American doctor who organized The HeLa Cancer Control Symposium. Deborah and Skloot talked on the phone for forty-five minutes before a family member told Deborah to stop. Spooked, Deborah refused to talk to Skloot again for another year. Skloot went to Baltimore to talk to Sonny. When he never showed up, she drove over to Turner Station to find Henrietta's old house. Instead, she met Courtney Speed, an unrelated but enterprising shop owner who tried to establish a Henrietta Lacks memorial museum in her store. Disappointed, Skloot went to Clover, Virginia, which was deserted. She then moved on to Lacks Town, where a man who just happened to be Henrietta's cousin Cootie flagged her down to ask if she was lost. Cootie earned his nickname after contracting polio as a child. He warned Skloot that the Lackses didn't like talking about medical stuff. On New Year's' Day, Sonny agreed to finally meet her. He took her to see Lawrence, the "Big Kahuna."

Ten months after their initial conversation, Deborah and Skloot spoke on the phone again. Deborah agreed to give an interview on two conditions: 1) that Skloot get Henrietta's name right and not refer to her as Helen Lane, and 2) that Skloot find out what happened to Elsie. Skloot agreed. When they met in person, they talked for three days straight, until Deborah got cagey about Henrietta's medical file. The next day, they visited Zakariyya, who was living in a home because of his partial blindness and hearing loss. Zakariyya was as angry as ever, but he was interested in talking about HeLa cells. Skloot, Deborah, and Zakariyya were invited to Christoph Lengauer's cancer lab at Johns Hopkins, where the Lackses gazed at cell division in wonder. The next day, Skloot and Deborah traveled out to Crownville, the assisted living facility where Elsie once lived. They learned what a horrible place Crownville was to live at that time. Most of the records were lost, but they did find a file on Elsie. It included a photo of Elsie with a pair of white hands clamped around her neck. This visit aggravated Deborah's stress-related illnesses, causing her to break out into hives. After the visit, they drove out to Clover, Virginia to visit Deborah's cousin Gary the Disciple, who performed a spiritual cleansing ceremony. Strangely moved, Rebecca returned the next day to talk to Gary without Deborah. They read the Bible together despite Rebecca's atheism.

Over time, the friendship between Skloot and Deborah grew. Deborah often called Skloot to clarify things she found during her research, and Skloot shared what she found, too. This was stressful for Deborah, however, and gradually Skloot stopped sharing out of consideration for Deborah's health. Deborah suffered a stroke in church, surviving thanks to her grandson's quick thinking. Things went downhill for the Lackses. Gary, Day, and Cootie died. Sonny had a quintuple bypass that left him with a $125,000 hospital bill. Deborah soon moved into an assisted living facility and worked full-time for her daughter to make ends meet. She died just days after Skloot called to tell her that the book was finally finished. The Immortal Life of Henrietta Lacks went on to be a big bestseller.

(The entire section is 2463 words.)