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, re-create 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?
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 nonnative English speakers. What impact did the decision to maintain speech authenticity have on the story?
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?
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?
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 statement. 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?
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?
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?
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 have given 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?
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?
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?
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?
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?
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 Lackses’ response to and interpretation of the scientific information they receive about HeLa? How does Skloot’s attitude toward religious faith and science evolve as a result of her relationship with the Lackses?
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?
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?
Start by unraveling the complicated history of Henrietta Lacks’s tissue cells. Who did what with the cells, when, where and for what purpose? Who benefited, scientifically, medically, and monetarily?
What are the specific issues raised in the book—legally and ethically? Talk about the 1980s John Moore case: the appeal court decision and its reversal by the California Supreme Court.
Follow-up to Question #2: Should patient consent be required to store and distribute their tissue for research? Should doctors disclose their financial interests? Would this make any difference in achieving fairness? Or is this not a matter of fairness or an ethical issue to begin with?
What are the legal ramifications regarding payment for tissue samples? Consider the the RAND corporation estimation that 304 million tissue samples, from 178 million are people, are held by labs.
What are the spiritual and religious issues surrounding the living tissue of people who have died? How do Henrietta’s descendants deal with her continued “presence” in the world…and even the cosmos (in space)?
Were you bothered when researcher Robert Stevenson tells author Skloot that “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 dissociate your materials from the people they come from”? Is that an ugly outfall of scientific resarch…or is it normal, perhaps necessary, for a scientist to distance him/herself? If “yes” to the last part of that question, what about research on animals…especially for research on cosmetics?
What do you think of the incident in which Henrietta’s children “see” their mother in the Johns Hopkins lab? How would you have felt? Would you have sensed a spiritual connection to the life that once created those cells…or is the idea of cells simply too remote to relate to?
Is race an issue in this story? Would things have been different had Henrietta been a middle class white woman rather than a poor African American woman? Consider both the taking of the cell sample without her knowledge, let alone consent… and the questions it is raising 60 years later when society is more open about racial injustice?
Author Rebecca Skloot is a veteran science writer. Did you find it enjoyable to follow her through the ins-and-outs of the laboratory and scientific research? Or was this a little too “petri-dishish” for you?
What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?
By Go Big Read
The Immortal Life of Henrietta Lacks is the story of an African American woman and her family that touches on many big issues: bioethics, racism, poverty, science, faith, and more. What threads stand out to you and why?
Race and racism are woven throughout the book, both in the story presented and in the process of the research for the book. Skloot was yet another white person asking the Lacks family about Henrietta. How do you feel about a white woman creating the narrative of this story? How did her race help or hinder Skloot in the writing and researching of the book?
The author notes social inequities both explicitly and implicitly. What parts of Henrietta’s story might be different if she had been white? What might have been different if she had been middle or upper middle class?
What role did the deferential attitude toward doctors in the early 20th century play in the interaction between Henrietta and her family and Johns Hopkins? How has that attitude toward doctors changed over the decades? Do patients’ socioeconomic differences affect the relationship today?
Henrietta Lacks died in 1951, but her cancer cells are still alive today. Do you think they carry some essence of Henrietta? How do you think you would perceive cells from someone close to you that grow in culture in a laboratory?
A week after you finish reading the book, will you remember how cells divide? Do you now have a better understanding of cell biology? Either way, does it matter to you?
What does this book tell us about the history of science and how science has progressed since the 1950s? After reading this book and considering the events it details, what do you think are key factors that influence scientific progress?
The book is filled with stories of people used as research subjects, sometimes without their knowledge, sometimes with ill-informed consent, sometimes because of their inability to understand (patients with mental illness) or resist (prisoners). Were you aware of this history before reading the book? Do you think doctors and researchers of the past had a fundamentally different view of people than they do today?
Today the definition of ‘informed consent’ remains murky. What did you learn about what it means or doesn’t mean? What does it mean to you?
In the years since the uniqueness of Henrietta Lacks’s cells were discovered, others have been identified with cells that are valuable on the research market. In Chapter Five, Skloot details the history of John Moore, whose cells produced rare proteins, and Ted Slavin, whose cells produced valuable antibodies. All three cases are quite different in many ways, including how their doctors used the information. Should individuals be able to profit from their own cells? Should their doctors? With consent? Do you think Henrietta would have provided consent for her cells to be taken and used had she been asked?
How do you think Zakariyya reacted to the completed book and to the way the family was depicted? How do you think Deborah would have reacted?
One of the issues the book addresses is patient privacy. Henrietta completely lost hers long before the book was published, but also didn’t get the fame her daughter, Deborah, thought she so richly deserved. Why does Deborah want fame for Henrietta?
Skloot had to make a lot of choices about how she recounted Henrietta’s story and how she structured the book. What do we know about her process from the foreword and endnotes? How does her narrative reconstruction of Henrietta’s life impact the story? How do you feel about the reconstruction?
Skloot recounts Deborah’s abuse by Galen in Chapter 15. While difficult to read, it gives the reader important information about what Deborah has been through. Why did Deborah think this part of her story was important to the overall narrative? Does it change how you see Deborah? Her father, Day?
Skloot tells several stories in this book: personal, family and scientific. How is she able to do this? In an interview with Booklist magazine (see the Go Big Read web site) Skloot says she first heard of HeLa cells at the age of 16 when her own father was battling a viral infection with experimental drugs administered three to four times a week. Do you think her father’s illness influenced her decision to pursue this story? Might his illness and treatment have influenced what threads she included in the book?
Making health care affordable to all Americans has been a recent political focus. What does the story of Henrietta Lacks and her family add to this discussion?