Mar 4th, 2011 by Lisa
The Immortal Life of Henrietta Lacks by Rebecca Skloot
In The Immortal Life of Henrietta Lacks, Rebecca Skloot tells the story of the woman whose cells have contributed to numerous medical breakthroughs without the knowledge or consent of her family. This book raises the question of who owns your tissues once they are removed from your body. This book is also about the family Henrietta left behind, their struggle with paying for their own medical care and how they have dealt with knowing that part of their mother continues to thrive despite her death.
From the book flap:
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, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. 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.
Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia—a land of wooden slave quarters, faith healings, and voodoo—to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.
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, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? 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.
Book Club Party Ideas for The Immortal Life of Henrietta Lacks
Book Club Menu
Yesterday, I did a blog post about food ideas for a medically themed book club party. There are recipes for Cotton Balls, Qtips and Tongue Depressors. A ladyfinger topped with white chocolate can represent a bandaid and Triscuits are a dead ringer for gauze.
Book Club Resources
Ratings at the time this post was published
|Goodreads: 4.16 (11,033 ratings)|
|Amazon: 4.5 stars (515 reviews)|
|Barnes and Noble: 4 stars (821 ratings)|
|My rating: 4 stars. This is a great pick for a book club as there are many issues to discuss regarding medical ethics and access to medical care.|
- “A deftly crafted investigation of a social wrong committed by the medical establishment, as well as the scientific and medical miracles to which it led.” —Washington Post
- “The Immortal Life of Henrietta Lacks is a remarkable feat of investigative journalism and a moving work of narrative nonfiction that reads with the vividness and urgency of fiction. It also raises sometimes uncomfortable questions with no clear-cut answers about whether people should be remunerated for their physical, genetic contributions to research and about the role of profit in science.” —National Public Radio
- “The Immortal Life of Henrietta Lacks is a fascinating book for people interested in scientific or medical research, but its real achievement lies in it’s humane – and deeply human – look at both Mrs. Lacks and her descendants. – Literary Corner Cafe Blog
Purchase The Immortal Life of Henrietta Lacks at your favorite bookseller
Discussion Questions for The Immortal Life of Henrietta Lacks
- On page xiii, Rebecca Skloot states, “This is a work of nonfiction. No names have been changed, no characters invented, noevents fabricated.” Consider the process Skloot went through to verify dialogue, re-create scenes, and establish facts. Imaginetrying to re-create scenes such as when Henrietta discovered her tumor (page 15). What does Skloot say on pages xiii–xivand 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 heavySouthern accent, and Lengauer and Hsu speak as nonnative English speakers. What impact did the decision to maintainspeech 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 alsofinding 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 intrudeson the narrative, but she takes us along with her on her reporting.” How would the story have been different if she had notbeen a part of it? What do you think would have happened to scenes like the faith healing on page 289? Are there otherscenes 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 Deborahsays, “Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible.” Discussthe deeper meaning behind this statement. Think not only of her words, but also of the physical reaction she was having todelving into her mother’s and sister’s medical histories. If you were in Deborah’s situation, how would you react to someonewanting 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 significanceof the titles given to each part: Life, Death, and Immortality. How would the story have been different if it were toldchronologically?
- As a journalist, Skloot is careful to present the encounter between the Lacks family and the world of medicine withouttaking 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 theother, 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 performany operative procedures and under any anaesthetic either local or general that they may deem necessary in the propersurgical care and treatment of: ________” (page 31). Based on this statement, do you believe TeLinde and Gey had theright to obtain a sample from her cervix to use in their research? What information would they have had to give her forHenrietta to have given informed consent? Do you think Henrietta would have given explicit consent to have a tissuesample used in medical research if she had been given all the information? Do you always thoroughly read consentforms before signing them?
For more discussion questions and a reader’s guide visit RebeccaSkloot.com
About the Author
Rebecca Skloot is a science writer whose articles have appeared in The New York Times Magazine, O, The Oprah Magazine, Discover, Prevention, Glamour, and others. She has worked as a correspondent for NPR’s Radio Lab and PBS’s NOVA scienceNow, and is a contributing editor at Popular Science magazine. Her work has been anthologized in several collections, including The Best Food Writing and The Best Creative Nonfiction. She is a former vice president of the National Book Critics Circle, and has taught nonfiction in the creative writing programs at the University of Memphis and the University of Pittsburgh, and science journalism at New York University’s Science, Health, and Environmental Reporting Program. She blogs about science, life, and writing at Culture Dish, hosted by Seed magazine. This is her first book.
Rebecca Skloot founded the Henrietta Lacks Foundation, which provides financial assistance to needy individuals who have made important contributions to scientific research without their knowledge or consent. A portion of her the book proceeds goes to the foundation.
Congratulations to Rebecca Skloot! The Immortal Life of Henrietta Lacks was selected for more than sixty best of the year lists Including:
New York Times Notable Book
Entertainment Weekly #1 Nonfiction Book of the Year
New Yorker Reviewers’ Favorite
American Library Association Notable Book
People Top Ten Book of the Year
Washington Post Book World Top Ten Book of the Year
Salon.com Best Book of the Year
USA Today Ten Books We Loved Reading
O, The Oprah Magazine Top Ten Book of the Year
National Public Radio Best of the Bestsellers
Boston Globe Best Nonfiction Book of the Year
Financial Times Nonfiction Favorite
Los Angeles Times Critics’ Pick
Bloomberg Top Nonfiction
New York magazine Top Ten Book of the Year
Slate.com Favorite Book of the Year
TheRoot.com Top Ten Book of the Year
Discover magazine 2010 Must-Read
Publishers Weekly Best Book of the Year
Library Journal Top Ten Book of the Year
Kirkus Reviews Best Nonfiction Book of the Year
U.S. News & World Report Top Debate-Worthy Book
Booklist Top of the List—Best Nonfiction Book
One more person I want to recognize is Dr. George N. Papanicolaou, who revolutionized the treatment of cervical cancer with his development of the Pap smear.
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