Synopses & Reviews
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 effects of the atom bomb; 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?
"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." The Boston Globe
"Skloot's vivid account begins with the life of Henrietta Lacks, who comes fully alive on the page...Immortal Life reads like a novel." Washington Post
"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." St. Petersburg Times
"This is exactly the sort of story that books were made to tell — thorough, detailed, quietly passionate, and full of revelation." Ted Conover, author of Newjack and The Routes of Man
"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." Booklist (Starred Review)
"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." Valerie Ann Johnson, Ms. Magazine
(read the entire Ms. review
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.
About the Author
REBECCA SKLOOT is an award-winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many others. She is coeditor of The Best American Science Writing 2011 and has worked as a correspondent for NPR’s Radiolab and PBS’s Nova ScienceNOW. She was named one of five surprising leaders of 2010 by the Washington Post. Skloot's debut book, The Immortal Life of Henrietta Lacks, took more than a decade to research and write, and instantly became a New York Times bestseller. It was chosen as a best book of 2010 by more than sixty media outlets, including Entertainment Weekly, People, and the New York Times. It is being translated into more than twenty-five languages, adapted into a young reader edition, and being made into an HBO film produced by Oprah Winfrey and Alan Ball. Skloot is the founder and president of The Henrietta Lacks Foundation. She has a B.S. in biological sciences and an MFA in creative nonfiction. She has taught creative writing and science journalism at the University of Memphis, the University of Pittsburgh, and New York University. She lives in Chicago. For more information, visit her website at RebeccaSkloot.com, where you’ll find links to follow her on Twitter and Facebook.
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?
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
“I could not put the book down . . . The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly
“Science writing is often just about ‘the facts.’ Skloot’s book, her first, is far deeper, braver, and more wonderful.” —New York Times Book Review
“The Immortal Life of Henrietta Lacks is a triumph of science writing...one of the best nonfiction books I have ever read.” —Wired.com
“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
“Riveting...a tour-de-force debut.” —Chicago Sun-Times
“A real-life detective story, The Immortal Life of Henrietta Lacks probes deeply into racial and ethical issues in medicine . . . The emotional impact of Skloot’s tale is intensified by its skillfully orchestrated counterpoint between two worlds.” —Nature
“A jaw-dropping true story . . . raises urgent questions about race and research for ‘progress’ . . . an inspiring tale for all ages.” —Essence
“This extraordinary account shows us that miracle workers, believers, and con artists populate hospitals as well as churches, and that even a science writer may find herself playing a central role in someone else’s mythology.” —The New Yorker
“Has the epic scope of Greek drama, and a corresponding inability to be easily
explained away.” —SF Weekly
“One of the great medical biographies of our time.” —The Financial Times
“Like any good scientific research, this beautifully crafted and painstakingly researched book raises nearly as many questions as it answers . . . In a time when it’s fashionable to demonize scientists, Skloot generously does not pin any sins to the lapels of the researchers. She just lets them be human . . . [and] challenges much of what we believe of ethics, tissue ownership, and humanity.” —Science
“Indelible . . . The Immortal Life of Henrietta Lacks is a heroic work of cultural and medical journalism.” —Laura Miller, Salon.com
“No dead woman has done more for the living . . . a fascinating, harrowing, necessary book.” —Hilary Mantel, The Guardian (U.K.)
“The Immortal Life of Henrietta Lacks does more than one book ought to be able to do.” —Dallas Morning News
“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.” —Boston Globe
“This remarkable story of how the cervical cells of the late Henrietta Lacks, a poor black woman, enabled subsequent discoveries from the polio vaccine to in vitro fertilization is extraordinary in itself; the added portrayal of Lacks's full life makes the story come alive with her humanity and the palpable relationship between race, science, and exploitation.—Paula J. Giddings, author of Ida, A Sword Among Lions; Elizabeth A. Woodson 1922 Professor, Afro-American Studies, Smith College
“Skloot’s engaging, suspenseful book is an incredibly welcome addition for non-science wonks.” —Newsweek
“Extraordinary . . . If science has exploited Henrietta Lacks [Skloot] is determined not to. This biography ensures that she will never again be reduced to cells in a petri dish: she will always be Henrietta as well as HeLa.” —The Telegraph (U.K.)
“Brings the Lacks family alive . . . gives Henrietta Lacks another kind of immortality—this one through the discipline of good writing.” —Baltimore Sun
“A work of both heart and mind, driven by the author’s passion for the story, which is as endlessly renewable as HeLa cells.” —Los Angeles Times
“In this gripping, vibrant book, Rebecca Skloot looks beyond the scientific marvels to explore the ethical issues behind a discovery that may have saved your life.” —Mother Jones
“More than ten years in the making, it feels like the book Ms. Skloot was born to write . . . Skloot, a young science journalist and an indefatigable researcher, writes about Henrietta Lacks and her impact on modern medicine from almost every conceivable angle and manages to make all of them fascinating . . . a searching moral inquiry into greed and blinkered lives . . . packed with memorable characters.” —Dwight Garner, New York Times, Top Ten Book of 2010
“Astonishing . . .No matter how much you may know about basic biology, you will be amazed by this book. —The Journal of Clinical Investigation
“Rebecca Skloot did her job, and she did it expertly . . . A riveting narrative that is wholly original.” —THEROOT.COM
“Moving . . .” —The Economist
“Journalist Rebecca Skloot’s history of the miraculous cells reveals deep injustices in U.S. medical research.” —TIME
“The Immortal Life of Henrietta Lacks is a fascinating look at the woman whose cultured cells—the first to grow and survive indefinitely, harvested without compensation or consent—have become essential to modern medicine.” —Vogue
“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
“An indelible, marvelous story as powerful as those cells.” —Philadelphia Inquirer
“As much an act of justice as one of journalism.” —Seattle Times
“A stunning book . . . surely the definitive work on the subject.” —The Independent(U.K.)
“Graceful . . . I can’t think of a better way to capture the corrosive effects of ethical transgressions in medical research. It’s a heartbreaking story, beautifully rendered.” —The Lancet
“Read this . . . By letting the Lackses be people, and by putting them in the center of the history, Skloot turns just another tale about the march of progress into a complicated portrait of the interaction between science and human lives. —BOINGBOING.NET
“[A] remarkable and moving book . . . a vivid portrait of Lacks that should be as abiding as her cells.” —The Times (U.K.)
“I can’t imagine a better tale. A detective story that’s at once mythically large and painfully intimate. I highly recommend this book.” —Jad Abumrad, Radiolab
“Skloot is a terrific popularizer of medical science, guiding readers through this dense material with a light and entertaining touch.” —The Globe and Mail (Canada)
“A rare and powerful combination of race, class, gender,medicine, bioethics, and intellectual property; far more rare is the writer that can so clearly fuse those disparate threads into a personal story so rich and compelling.” —Seed
“Powerful story . . . I feel moved even to say on behalf of the thousands of anonymous black men and women who’ve been experimented on for medical purposes, thank you. Thank you for writing this important book.” —Kali-AhsetAmen, Radio Diaspora
“Skloot has written an important work of immersive nonfiction that brings not only the stories of Henrietta Lacks and HeLa once more into line, but also catharsis to a family in sore need of it.” —The Times Literary Supplement
“A masterful work of nonfiction . . . a real page turner.” —Hanna Rosin, Slate
“Skloot explores human consequences of the intersection of science and business, rescuing one of modern medicine’s inadvertent pioneers from an unmarked grave.” —US News & World Report
“Remarkably balanced and nonjudgmental . . . The Immortal Life of Henrietta Lacks will leave readers reeling, plain and simple. It has a power and resonance rarely found in any genre, and is a subject that touches each of us, whether or not we are aware of our connection to Henrietta’s gift.” —The Oregonian
“This is the perfect book. It reads like a novel but has the intellectual substance of a science textbook or a historical biography.” —The Daily Nebraskan
“Illuminates what happens when medical research is conducted within an unequal health-care system and delivers an American narrative fraught with intrigue, tragedy, triumph, pathos, and redemption.” --Ms.
“A tremendous accomplishment —a tale of important science history that reads like a terrific novel.” —Kansas City Star
“Good science writing isn’t easy, but Skloot makes it appear so.” —The Wichita Eagle
“Encompasses nearly every hot-button issue currently surrounding the practice of medicine.” —Madison Capital Times
“Defies easy categorization . . . as unpredictable as any pulp mystery and as strange as any science fiction.” —Willamette Week
“An achievement . . . navigates both the technical and deeply personal sides of the HeLa story with clarity and care.” —The Portland Mercury
“[A] remarkable book.” —London Review of Books
“An essential reminder that all human cells grown in labs across the world, HeLa or otherwise, came from individuals with fears, desires, and stories to tell.” —Chemical & Engineering News
“Blows away the notion that science writing must be the literary equivalent to Ambien.” —Chicago Tribune
“Seldom do you read a book that is science, social history, and a page turner.” —British Medical Journal
“Thrilling and original nonfiction that refuses to be shoehorned into anything as trivial as a genre. It is equal parts popular science, historical biography, and detective novel.” —Ed Yong, DISCOVER.COM
“Best book I’ve read in years.” —Brian Sullivan, Fox Business Network
“Thanks to Rebecca Skloot, we may now remember Henrietta—who she was, how she lived, how she died.” —The New Republic
“We need more writers like Rebecca Skloot.” —E.O.Wilson