The Immortal Life of Henrietta Lacks | Study Guide

Rebecca Skloot

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The Immortal Life of Henrietta Lacks | Summary

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Summary

The Immortal Life of Henrietta Lacks moves back and forth in time, from Henrietta Lacks's lifetime to Rebecca Skloot's investigation of Henrietta's story and the Lacks's family history. For clarity, each part of this summary covers Henrietta's life story and the family's story first, followed by the story of Skloot's research.

Prologue

Skloot becomes interested in Henrietta Lacks's story after hearing about the HeLa cells during a biology class. Skloot begins searching for information about Henrietta Lacks when she gets a computer, finding 1970s articles in magazines like Ebony and Jet. Skloot notices Henrietta Lacks's daughter, Deborah Lacks, is never quoted in the articles. In 2000, she decides to reach out to Deborah. During the next decade, Skloot and Deborah develop a strong relationship, and together they search for information about Henrietta's history. Deborah's openness, trust, and determination help Skloot piece together the story of Henrietta's life and death and the injustices her family suffered.

Deborah's Voice

Deborah Lacks says she has learned how much good her mother's HeLa cells have done, and this makes her proud. She knows firsthand how beneficial the cells have been: they enabled researchers to develop the medications she takes. Deborah is angry her family still can't afford sufficient healthcare, despite all Henrietta gave to science. Still, she focuses on what she wants most: to know about her mother.

Part 1: Life

Rebecca Skloot relates the story of Henrietta Lacks's childhood and the beginning of her romantic relationship with her cousin, David Lacks, nicknamed Day, who becomes her husband. Henrietta was born on August 1, 1920, in a small farming town called Clover, Virginia. After Henrietta's mother died while giving birth to her 10th child, the children went to live with relatives. Henrietta was sent to live with her grandfather, Tommy Lacks. Grandpa Tommy was also raising Day, among other cousins, and all the children worked in the tobacco fields their ancestors had farmed as slaves. Day stopped school in fourth grade, and Henrietta stopped after sixth grade. Henrietta and Day had their first child, Lawrence, when Henrietta was 14. Then the couple had another child, Elsie. They married in 1941 and moved to Turner Station, Maryland, where Day hoped to get work in a steel mill. Henrietta and Day had three more children: David Jr. (Sonny), Deborah, and Joe.

Skloot relates that Henrietta is the first to know she is ill. Before Henrietta gives birth to Joe, she feels a heaviness in her abdomen and thinks something is wrong with her womb, but when she is at the hospital giving birth, doctors don't see anything wrong with her. After Henrietta gives birth to Joe, doctors convince her to put her second child, Elsie, in the Crownsville State Hospital because Elsie is epileptic and developmentally delayed. At the same time, Henrietta continues to be in pain and begins to bleed, and when she checks herself, she feels a lump on her cervix. She goes to the gynecological clinic at Johns Hopkins Hospital in Baltimore, Maryland, where Dr. Howard Jones takes a biopsy of the lump and discovers it is cancerous.

Henrietta undergoes cancer treatment at Johns Hopkins. Dr. Richard TeLinde, who is also conducting research on cervical cancers, treats Henrietta with radiation. Dr. TeLinde gives a piece of Henrietta's tumor to George Gey, head of tissue culture research at Johns Hopkins, without obtaining her permission. When Gey's assistant cultures, or cultivates, the HeLa cells, she and Gey realize the cells are likely immortal—because of mutation they will keep dividing and proliferating rather than dying like normal cells. The researchers begin to share the HeLa cells with other labs, again without Henrietta's knowledge or permission.

While Henrietta is undergoing radiation treatment, Gey sends her HeLa cells to researchers around the world. Henrietta believes her cancer is spreading and tells her doctors so several times, but they claim to find nothing wrong with her. Three weeks after they declare that Henrietta is fine, an examining doctor finds otherwise; her cancer is indeed spreading, and he says it is inoperable.

Doctors continue to give Henrietta radiation treatment to try to shrink her proliferating tumors and relieve her pain, but the cancer only worsens. She tells her sister Gladys to make sure Day takes care of their children, especially Deborah; in a haze of morphine, she passes away on October 4, 1951.

Researching Henrietta Lacks's life, Skloot contacts Roland Pattillo, one of George Gey's few African American students, after discovering that he organized a symposium about the HeLa cells. He reluctantly puts Skloot in touch with Deborah, who ends up refusing to talk to her. Day Lacks hangs up on Skloot when she calls him. Skloot goes to Turner Station, planning to meet Sonny Lacks, but he doesn't show up. Skloot meets with Courtney Speed in Turner Station, and Speed shows her a BBC documentary on the Lacks family. Skloot later goes to Clover, Virginia, to visit Henrietta's cousin Cootie.

Part 2: Death

Day reluctantly gives permission for Henrietta's body to be autopsied. George Gey and his assistant take samples from Henrietta's body. Meanwhile, the HeLa cells are being reproduced in huge numbers at the HeLa Distribution Center, set up at the Tuskegee Institute in Alabama, at the same time the Tuskegee Study of Untreated Syphilis in the Negro Male is under way. In that study, which lasted from 1932 until 1972, researchers from the U.S. Public Health Service promised—but did not provide—treatment to men who had the highly contagious and dangerous disease.

Researchers use HeLa cells to study polio, spawning the new field of virology—the study of viruses. Scientists figure out how to freeze and ship the cells to researchers, who learn to clone the cells, and the new field of human genetics is born. The cells are also used instead of lab animals to research how different substances affect cells. Virologist Chester Southam begins injecting cancer survivors with the HeLa cells, but his use is found to be unethical, causing the National Institutes of Health (NIH) to mandate informed-consent rules and review boards to approve or reject research projects. The HeLa cells go up into space and are used in hybrid cell research. Researchers then discover HeLa cells have contaminated millions of cells. Now everyone wants to know the HeLa cells' origin; finally, in 1973, Henrietta Lacks's name is released to the press.

Meanwhile, Ethel, a woman who hated Henrietta, is now looking after Henrietta's children. After Ethel and her husband, Galen, move in with Day, Ethel nearly starves the children and subjects the youngest, Joe, to daily beatings; Galen begins to sexually abuse Deborah Lacks. Bobbette Lacks, wife of Henrietta's oldest child, Lawrence, tried to put a stop to the abuse. Deborah begs Lawrence to tell her about their sister Elsie, but he is too emotional to talk about her.

At 16 Deborah gets pregnant by her boyfriend, Cheetah, but Bobbette makes Deborah finish her high school education and get a job after graduation. When she is 18 Deborah marries the abusive Cheetah. Joe, her younger brother, keeps getting into fights and ends up killing a neighborhood boy named Ivy. With Day's help, Joe runs from the law, but he finally returns, surrenders himself, and goes to jail. In prison he converts to Islam and changes his name to Zakariyya. After having another child with Cheetah, Deborah finally gets fed up with Cheetah's abuse and moves in with her father to hide from Cheetah; eventually she gets her own apartment.

Henrietta's cousin Cliff shows Skloot where Henrietta is buried. They also see the Lacks family's old home-house, and Cliff tells Skloot about the Lacks family's origins: there were black and white Lacks factions, but the white Lackses refused to admit they were related to the black Lackses. One side of the family owned slaves and the other side was slaves. Back in Turner Station, Sonny Lacks finally meets Skloot. He takes her to Lawrence and Bobbette Lacks's house, where Skloot explains what his mother's HeLa cells have done for science. Lawrence relates everything he has learned to Sonny and Day Lacks, and Day says that no one ever told him about his wife's cells and that he agreed only to the autopsy, nothing more. Bobbette says that Johns Hopkins Hospital, which was opened to treat poor and black patients, is untrustworthy because Henrietta's cells were taken without her permission.

Part 3: Immortality

In 1973 Bobbette Lacks meets a friend's brother-in-law; he happens to be a cancer researcher. He notes Bobbette shares a last name with the woman whose cancer cells he studies—Henrietta Lacks. Bobbette is furious when she realizes he is talking about her mother-in-law; no one told the family her cells were being used for research.

Researcher Victor McKusick, who earlier published Henrietta's name, wants to find out how HeLa cells contaminate other cells and how to stop it. He and his assistant draw samples of her children's blood to research genetic markers, never informing the Lacks family what he will do with the samples. Day assumes they are looking for cancer; the family panics when no test results come back.

When Michael Rogers, a Rolling Stone reporter interviews the family, he realizes how little they know about their mother's cells. When the family reads Rogers's published article in Rolling Stone, they learn that researchers have been paying for their mother's cells. Johns Hopkins Hospital hasn't sold the cells, but private companies have. Meanwhile Deborah is trying to educate herself about her mother's cells by studying science textbooks and a dictionary. She is terrified by news articles about her mother's cells, fearing her mother will suffer from the diseases researchers inflict on the HeLa cells. The Rolling Stone story helps focus attention on racism in science.

The Lackses have grounds to sue over privacy violations or lack of informed consent, but they remain unaware of McKusick's genetic research. When a white man named John Moore sues in a similar situation, his case goes to the California Supreme Court, which rules against him: it says when tissue is removed from patients, the tissue ceases to be theirs.

Deborah marries her second husband, James Pullum. After Henrietta's youngest son, Zakariyya—formerly known as Joe—is released from jail, he participates in Johns Hopkins Hospital studies to earn money. Since he changed his name, no one knows he is one of Henrietta's children. Deborah finds a book by a reporter named Michael Gold containing information that could come only from medical records—information she believes Gold had no right to see or to publish. But in Maryland there is still no law protecting medical records, although it is not considered standard practice to share them.

In the mid-1980s research shows the HeLa cells are immortal because they were exposed to HPV—human papillomavirus—which causes genital warts. Separate research shows the HeLa cell's telomeres—parts that shorten and cause normal cells to die—keep growing thanks to an enzyme called telomerase, which allows the cells to keep regenerating.

Deborah and other Lacks family members are interviewed for a BBC—British Broadcasting Company—show about Henrietta Lacks. For one segment the show films Deborah at an Atlanta symposium organized by Roland Pattillo, one of George Gey's students.

Courtney Speed, who serves on the Turner Station Heritage Committee, works with sociologist Barbara Wyche to create a museum in Henrietta's honor. Deborah has mixed feelings about their using her mother's story. A con man named Cofield comes to see Deborah, saying he is a lawyer and telling her to sue Johns Hopkins Hospital. Cofield then sues Deborah and all the organizations involved in honoring Henrietta, which makes everyone nervous about talking to journalists. However, Roland Pattillo encourages Deborah to make an exception for Skloot.

Deborah agrees to meet with Skloot if doing so will help her learn what happened to Henrietta and Elsie. Skloot gives Deborah a painting by Christoph Lengauer, a cancer researcher at Johns Hopkins, depicting the HeLa cells, and invites her to the lab to see the cells. Deborah sifts through documents with Skloot for three days, although she often hesitates and expresses fears about the history and fate of her mother's cells. During the next year Deborah alternately trusts and distrusts Skloot's intentions in writing a book about Henrietta.

Deborah takes Skloot to meet Zakariyya, who is angry that researchers make money on the cells while he can't afford sufficient healthcare. Deborah gives Zakariyya the HeLa cells painting, and he agrees to go see the cells in Lengauer's lab. After Skloot takes Deborah and Zakariyya to see their mother's cells in the Johns Hopkins lab, she takes Deborah to Clover, and then they see Paul Lurz at the Crownsville Hospital, where they find out that Elsie died likely from invasive epilepsy treatments. When Deborah returns to Turner Station, she becomes ill and has a stroke. The next time Skloot goes to Clover, the entire Main Street has been razed. She tries to call Deborah but gets no answer. She finally reaches Sonny, who tells her that Deborah has died of a heart attack. Skloot then reminisces about Deborah's desire to be with her mother in heaven.

Afterword

Skloot reviews further court cases and controversies involving patient tissue rights, including privacy breaches and financial gain. She notes that the issues and the court cases are ongoing and will not be resolved any time soon.

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