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Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.
Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
|Publisher:||Penguin Random House Audio Publishing Group|
|Product dimensions:||5.10(w) x 5.90(h) x 1.20(d)|
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Excerpted from "The Immortal Life of Henrietta Lacks"
Copyright © 2015 Rebecca Skloot.
Excerpted by permission of Penguin Random House Audio Publishing Group.
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Table of Contents
A Few Words About This Book xiii
Prologue: The Woman in the Photograph 1
Deborah's Voice 9
Part 1 Life
1 The Exam … 1951 13
2 Clover … 1920-1942 18
3 Diagnosis and Treatment … 1951 27
4 The Birth of HeLa … 1951 34
5 "Blackness Be Spreadin All Inside" … 1951 42
6 "Lady's on the Phone" … 1999 49
7 The Death and Life of Cell Culture … 1951 56
8 "A Miserable Specimen" … 1951 63
9 Turner Station … 1999 67
10 The Other Side of the Tracks … 1999 77
11 "The Devil of Pain Itself" … 1951 83
Part 2 Death
12 The Storm … 1951 89
13 The HeLa Factory … 1951-1953 93
14 Helen Lane … 1953-1954 105
15 "Too Young to Remember" … 1951-1965 110
16 "Spending Eternity in the Same Place" … 1999 118
17 Illegal, Immoral, and Deplorable … 1954-1966 127
18 "Strangest Hybrid" … 1960-1966 137
19 "The Most Critical Time on This Earth Is Now" … 1966-1973 144
20 The HeLa Bomb … 1966 152
21 Night Doctors … 2000 158
22 "The Fame She So Richly Deserves" … 1970-1973 170
Part 3 Immortality
23 "It's Alive" … 1973-1974 179
24 "Least They Can Do" … 1975 191
25 "Who Told You You Could Sell My Spleen?" … 1976-1988 199
26 Breach of Privacy … 1980-1985 207
27 The Secret of Immortality … 1984-1995 212
28 After London … 1996-1999 218
29 A Village of Henriettas … 2000 232
30 Zakariyya … 2000 241
31 Hela, Goddess of Death … 2000-2001 250
32 "All That's My Mother" … 2001 259
33 The Hospital for the Negro Insane … 2001 268
34 The Medical Records … 2001 279
35 Soul Cleansing … 2001 286
36 Heavenly Bodies … 2001 294
37 "Nothing to Be Scared About" … 2001 297
38 The Long Road to Clover … 2009 305
Where They Are Now 311
About the Henrietta Lacks Foundation 314
Cast of Characters 329
Reading Group Guide 379
Reading Group Guide
1. On page xiii, Rebecca Skloot states “This is a work of nonfiction. No names have been changed, no characters invented, no events fabricated.” Consider the process Skloot went through to verify dialogue, recreate scenes, and establish facts. Imagine trying to re-create scenes such as when Henrietta discovered her tumor (page 15). What does Skloot say on pages xiii–xiv and in the notes section (page 346) about how she did this?
2. One of Henrietta’s relatives said to Skloot, “If you pretty up how people spoke and change the things they said, that’s dishonest” (page xiii). Throughout, Skloot is true to the dialect in which people spoke to her: the Lackses speak in a heavy Southern accent, and Lengauer and Hsu speak as non-native English speakers. What impact did the decision to maintain speech authenticity have on the story?
3. As much as this book is about Henrietta Lacks, it is also about Deborah learning of the mother she barely knew, while also finding out the truth about her sister, Elsie. Imagine discovering similar information about one of your family members. How would you react? What questions would you ask?
4. In a review for the New York Times, Dwight Garner writes, “Ms. Skloot is a memorable character herself. She never intrudes on the narrative, but she takes us along with her on her reporting.” How would the story have been different if she had not been a part of it? What do you think would have happened to scenes like the faith healing on page 289? Are there other scenes you can think of where her presence made a difference? Why do you think she decided to include herself in the story?
5. Deborah shares her mother’s medical records with Skloot, but is adamant that she not copy everything. On page 284 Deborah says, “Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible.” Discuss the deeper meaning behind this sentence. Think not only of her words, but also of the physical reaction she was having to delving into her mother’s and sister’s medical histories. If you were in Deborah’s situation, how would you react to someone wanting to look into your mother’s medical records?
6. This is a story with many layers. Though it’s not told chronologically, it is divided into three sections. Discuss the significance of the titles given to each part: Life, Death, and Immortality. How would the story have been different if it were told chronologically?
7. As a journalist, Skloot is careful to present the encounter between the Lacks family and the world of medicine without taking sides. Since readers bring their own experiences and opinions to the text, some may feel she took the scientists’ side, while others may feel she took the family’s side. What are your feelings about this? Does your opinion fall on one side or the other, or somewhere in the middle, and why?
8. Henrietta signed a consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (page 31). Based on this statement, do you believe TeLinde and Gey had the right to obtain a sample from her cervix to use in their research? What information would they have had to give her for Henrietta to give informed consent? Do you think Henrietta would have given explicit consent to have a tissue sample used in medical research if she had been given all the information? Do you always thoroughly read consent forms before signing them?
9. In 1976, when Mike Rogers’s Rolling Stone article was printed, many viewed it as a story about race (see page 197 for reference). How do you think public interpretation might have been different if the piece had been published at the time of Henrietta’s death in 1951? How is this different from the way her story is being interpreted today? How do you think Henrietta’s experiences with the medical system would have been different had she been a white woman? What about Elsie’s fate?
10. Consider Deborah’s comment on page 276: “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.” Is it possible to approach history from an objective point of view? If so, how and why is this important, especially in the context of Henrietta’s story?
11. Deborah says, “But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? Don’t make no sense” (page 9). Should the family be financially compensated for the HeLa cells? If so, who do you believe that money should come from? Do you feel the Lackses deserve health insurance even though they can’t afford it? How would you respond if you were in their situation?
12. Dr. McKusick directed Susan Hsu to contact Henrietta’s children for blood samples to further HeLa research; neither McKusick nor Hsu tried to get informed consent for this research. Discuss whether or not you feel this request was ethical. Further, think about John Moore and the patent that had been filed without his consent on his cells called “Mo” (page 201). How do you feel about the Supreme Court of California ruling that states when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes?
13. Religious faith and scientific understanding, while often at odds with each other, play important roles in the lives of the Lacks family. How does religious faith help frame the Lacks’ response to and interpretation of the scientific information they receive about HeLa? How does Skloot’s attitude towards religious faith and science evolve as a result of her relationship with the Lackses?
14. On page 261, Deborah and Zakariyya visit Lengauer’s lab and see the cells for the first time. How is their interaction with Lengauer different from the previous interactions the family had with representatives of Johns Hopkins? Why do you think it is so different? What does the way Deborah and Zakariyya interact with their mother’s cells tell you about their feelings for her?
15. Reflect upon Henrietta’s life: What challenges did she and her family face? What do you think their greatest strengths were? Consider the progression of Henrietta’s cancer in the last eight months between her diagnosis and death. How did she face death? What do you think that says about the type of person she was?