For those of you that haven't or couldn't attend book club lately, we'll be publishing the previous months' discussion questions here. I hope eventually to post discussion questions for all of the books we've covered since I took over a couple of years ago and beyond, all the way to the beginning over a decade and a half ago. It will take a while. Until then, we will be posting discussion questions on a weekly basis. Here are the questions from a 2012 title, The Immortal Life of Henrietta Lacks. We hope these questions spark discussions of your own.
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
Summary:
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly
NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION
NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail
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.
Discussion Questions
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?
Was it important for the author to use the voices of the people she interviewed . . . using dialect/language to portray those voices?
Did that technique, using people’s words and voices to recall events, make the book more readable? More believable? Could you see it done a different way?
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)?
What were some of the big issues in this book for you? Ethics. . . Do your body parts belong to you once they are taken out? Fairness . . . is life fair? Discrimination . . . do you think Henrietta got the same care as a poor white woman? A well off any color woman? Faith . . . poverty, patient privacy . . .
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 research...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?
How did she do explaining the science of cells and their use to the reader? Did the author recreate Henrietta for you? What sort of person was she?
When the author was warned about how to act around Deborah . . . p. 51 . . . what kind of person were you expecting? When you read that first phone conversation with Deborah, what did you think then? What sort of person was Deborah? As you read more of her story, how did you feel about her?
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?
How would you characterize the Lacks family? Why do you think they felt the way they did about their mother and her cells?
What did you think of daughter Deborah’s thinking about how her mother did so much for medicine and the children of HeLa couldn’t afford to go to a doctor?
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?
Why did Henrietta keep her cancer a secret? Do you think the doctors missed the tumor during the birth of her last baby? Or did it grow that quickly?
After her treatments, things looked positive for Henrietta, but things quickly turned south. Again, do you think her doctors were neglectful or could it have had something to do with the way her cells survived in the laboratory?
What did you think of the communication between Henrietta and her doctors . . . It appeared that she didn’t know that she would become barren or that the final treatments were merely to alleviate pain . . . What do you think was missing there?
In your opinion, what was the most appalling treatment of the Lacks family by medical personnel over the years?
What’s your opinion on researcher Gey visiting Henrietta . . . Do you think he did? On p. 103 it shows that Gey was unhappy about the way other scientists were using HeLa cells . . . did it seem as though he thought they belonged to him? Did they?
Did the good that Henrietta’s cells did for the world, from health to economic to scientific breakthroughs, make up for the way she was treated?
Do you think Henrietta would have given consent to let her cells be used?
Why were the scientists upset when the cells were traced back to Henrietta?
What were the differences between the other cell donors that the author talked about? Should people be able to profit from their own cells? Should doctors or corporations?
There was much in the early part of the book about how the family never knew about Henrietta’s cells . . . If you were in their shoes, would it be important to you? What would you want to know . . . would you want financial compensation? Would you feel a sense of violation when you did find out?
Do you think this book makes a case for universal health care?
Have doctor/patient relationships changed over the years? Do we still treat them as all knowing, all powerful people? Do you think poor people are still treated differently?
How much did you know about people being used as research subjects, with or without their consent . . . Do you think it still goes on today? Do you read all the papers you sign at the doctors?
On p. 130, there is discussion on testing on humans by a doctor injecting people with cancer cells. Some were prisoners, some ob/gyn patients... what did you think of his attitude?
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?
Which part was more interesting to you . . . The story of Henrietta or of her cells?
How much science did you learn? Was it important to the story that information about cells and their biology was incorporated into the book?
Why do you think the author was so determined to write this book . . . why didn’t she get discouraged with the so many brick walls she ran into?
How do you think Henrietta’s family reacted to the Skloot’s book? Would they have been pleased with her portrayal?
Why was it important to Deborah for her mother to be as famous as her cells were? Do you think she finally is?
Do you agree with the Lacks’ family desire to be compensated for Henrietta’s cells? Or for participating in the book? Did the author have any responsibility to do so? Does any author?
What do you think the author had in mind to accomplish with this book? Did she? Did she help make the life of the Lacks family any better?
What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?
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