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The Immortal Life of Henrietta Lacks

by

The Immortal Life of Henrietta Lacks Cover

 

 

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?

What Our Readers Are Saying

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Average customer rating based on 81 comments:

Stefan Poulos, October 21, 2014 (view all comments by Stefan Poulos)
very good book, great american history! hope they made a movie! =)
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pickfordm, August 6, 2014 (view all comments by pickfordm)
Except when I read for research purposes, I generally settle down with a book of fiction. The Immortal Life of Henrietta Lacks, though nonfiction, captured my interest because of the rave reviews and fascinating press it generated, and I quickly picked up a copy of the hardcover edition when the book came out last year. I found that it lived up to all the hype. It's an intelligent, interesting book which reads as fluidly as good fiction, vividly fleshes out real life characters with poignance and compassion, and also provides a clear-eyed description of the socio-economic inequities that plague our system. As for the science, I'm sure most of it is way (way!) over my head. However, unlike some academics, whose writing is indecipherable to all but their fellow experts, Skloot writes clearly and effectively about the importance of Ms. Lacks' immortal cells. Even though we may not "get" all the science, we understand the gist of what the author tells us, and certainly grasp its importance. She also seamlessly weaves into her book the history of medical research, and of issues like informed consent.

I also admire the way that Skloot puts herself, and her journey, into the narrative. Her relationship with Henrietta's troubled but gentle-spirited daughter was, for me, one of the most moving parts of the narrative. At the end of the book, you find that Skloot has established a scholarship fund for Henrietta Lacks' grandchildren, who remain impoverished despite the billions of dollars that have been made from their grandmother's cells. I definitely intend to visit the website and make a contribution, and I'm sure many other readers will do the same after reading this book.
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(1 of 2 readers found this comment helpful)
jenmariestone, January 30, 2013 (view all comments by jenmariestone)
This was a wonderful read. The intersection of family, history, ethics, science, and journalism create an inspiring web that illuminates the intricate connections between ideas and people.
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(3 of 6 readers found this comment helpful)
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Product Details

ISBN:
9781400052189
Author:
Skloot, Rebecca
Publisher:
Broadway
Author:
Anonymous
Subject:
History
Subject:
General
Subject:
Health and Medicine-History of Medicine
Copyright:
Edition Description:
Trade paper
Publication Date:
20110308
Binding:
Paperback
Grade Level:
General/trade
Language:
English
Pages:
400
Dimensions:
8 x 5.2 x 1 in 0.95 lb

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The Immortal Life of Henrietta Lacks Used Trade Paper
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Product details 400 pages Broadway - English 9781400052189 Reviews:
"Staff Pick" by ,

This is an absolutely fascinating account of a line of cells that would proliferate to such a degree that they became immortal. Shaved from a tumor in a poor black woman in the 1950s, cultured without her knowledge, and grown to amazing proportions, HeLa cells would change the face of science and medicine forever. Pivotal in the search for disease obliteration, HeLa would prove invaluable because it simply would not die. Yet, Henrietta Lacks did die, in pain and obscurity, and her family knew nothing of her living cells. Posing some very serious questions ranging from tissue ownership to the billion dollar pharmaceutical industry to the mad rush for the elusive cure for cancer to the impossible cost of health insurance, Skloot has done an admirable job of research here. Ironically, Henrietta's story, if read in a novel, would seem ridiculously fantastical. Yet she lived — and her cells still do. Her story is unforgettable. 

"Review A Day" by , "Henrietta Lacks, a poor married, African American mother of five, died at 31 in Baltimore from a vicious form of cervical cancer. During her treatment at Johns Hopkins Hospital and after her death there in 1951, researchers harvested some of her tumor cells. This wasn't unusual. Though Lacks consented to treatment, no one asked permission to take her cells; the era's scientists considered it fair to conduct research on patients in public wards since they were being treated for free. What was unusual was what happened next." (read the entire Ms. review)
"Review" by , "The Immortal Life of Henrietta Lacks is a fascinating read and a ringing success. It is a well-written, carefully-researched, complex saga of medical research, bioethics, and race in America. Above all it is a human story of redemption for a family, torn by loss, and for a writer with a vision that would not let go."
"Review" by , "Skloot's vivid account begins with the life of Henrietta Lacks, who comes fully alive on the page...Immortal Life reads like a novel."
"Review" by , "Riveting...raises important questions about medical ethics...It's an amazing story...Deeply chilling... Whether those uncountable HeLa cells are a miracle or a violation, Skloot tells their fascinating story at last with skill, insight and compassion."
"Review" by , "This is exactly the sort of story that books were made to tell — thorough, detailed, quietly passionate, and full of revelation."
"Review" by , "Skloot tells a truly astonishing story of racism and poverty, science and conscience, spirituality and family driven by a galvanizing inquiry into the sanctity of the body and the very nature of the life force."
"Synopsis" by , Skloot brilliantly weaves together the story of Henrietta Lacks — a woman whose cells have been unwittingly used for scientific research since the 1950s — with the birth of bioethics, and the dark history of experimentation on African Americans.
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