Book Club Discussion Guide. Book Title: Immortal life of Henrietta Lacks by Rebecca Skloot

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1 About the Author Book Title: Immortal life of Henrietta Lacks by Rebecca Skloot 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.

2 About the Book Book Title: Immortal life of Henrietta Lacks by Rebecca Skloot 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.

3 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.

4 Discussion Questions Book Title: Immortal life of Henrietta Lacks by Rebecca Skloot 1. 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? 2. 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. 3. 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? 4. 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. 5. 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)? 6. 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? 7. 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

5 created those cells...or is the idea of cells simply too remote to relate to? 8. 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? 9. 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? 10. What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?

6 Reviews Book title: Immortal life of Henrietta Lacks by Rebecca Skloot One of the most graceful and moving nonfiction books I've read in a very long time. A thorny and provocative book about cancer, racism, scientific ethics and crippling poverty, The Immortal Life of Henrietta Lacks also floods over you like a narrative dam break, as if someone had managed to distill and purify the more addictive qualities of "Erin Brockovich," Midnight in the Garden of Good and Evil and The Andromeda Strain. More than 10 years in the making, it feels like the book Ms. Skloot was born to write. It signals the arrival of a raw but quite real talent... [The Immortal Life of Henrietta Lacks] has brains and pacing and nerve and heart, and it is uncommonly endearing. Dwight Garner - New York Times Rebecca Skloot introduces us to the "real live woman," the children who survived her, and the interplay of race, poverty, science and one of the most important medical discoveries of the last 100 years. Skloot narrates the science lucidly, tracks the racial politics of medicine thoughtfully and tells the Lacks family's often painful history with grace. She also confronts the spookiness of the cells themselves, intrepidly crossing into the spiritual plane on which the family has come to understand their mother's continued presence in the world. Science writing is often just about "the facts." Skloot's book, her first, is far deeper, braver and more wonderful. Lisa Margonelli - New York Times Book Review Skloot's vivid account...reads like a novel. The prose is unadorned, crisp and transparent... This book, labeled "science--cultural studies," should be treated as a work of American history. It's 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. Skloot's compassionate account can be the first step toward recognition, justice and healing. Eric Roston - Washington Post

7 Science journalist Skloot makes a remarkable debut with this multilayered story about faith, science, journalism, and grace. It is also a tale of medical wonders and medical arrogance, racism, poverty and the bond that grows, sometimes painfully, between two very different women Skloot and Deborah Lacks sharing an obsession to learn about Deborah s mother, Henrietta, and her magical, immortal cells. Henrietta Lacks was a 31-year-old black mother of five in Baltimore when she died of cervical cancer in Without her knowledge, doctors treating her at Johns Hopkins took tissue samples from her cervix for research. They spawned the first viable, indeed miraculously productive, cell line known as HeLa. These cells have aided in medical discoveries from the polio vaccine to AIDS treatments. What Skloot so poignantly portrays is the devastating impact Henrietta s death and the eventual importance of her cells had on her husband and children. Skloot s portraits of Deborah, her father and brothers are so vibrant and immediate they recall Adrian Nicole LeBlanc s Random Family. Writing in plain, clear prose, Skloot avoids melodrama and makes no judgments. Letting people and events speak for themselves, Skloot tells a rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society s most vulnerable people. Publishers Weekly This distinctive work skillfully puts a human face on the bioethical questions surrounding the HeLa cell line. Henrietta Lacks, an African American mother of five, was undergoing treatment for cancer at Johns Hopkins University in 1951 when tissue samples were removed without her knowledge or permission and used to create HeLa, the first "immortal" cell line. HeLa has been sold around the world and used in countless medical research applications, including the development of the polio vaccine. Science writer Skloot, who worked on this book for ten years, entwines Lacks's biography, the development of the HeLa cell line, and her own story of building a relationship with Lacks's children. Full of dialog and vivid detail, this reads like a novel, but the science behind the story is also deftly handled. Verdict: While there are other titles on this controversy (e.g., Michael Gold's A Conspiracy of Cells: One Woman's Immortal Legacy and the Medical Scandal It Caused), this is the most compelling account for general readers, especially those interested in questions of medical research ethics. Highly recommended. Carla Lee, Univ. of Virginia Lib., Charlottesville Library Journal

8 Writing with a novelist's artistry, a biologist's expertise, and the zeal of an investigative reporter, 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 A dense, absorbing investigation into the medical community's exploitation of a dying woman and her family's struggle to salvage truth and dignity decades later. In a well-paced, vibrant narrative, Popular Science contributor and Culture Dish blogger Skloot (Creative Writing/Univ. of Memphis) demonstrates that for every human cell put under a microscope, a complex life story is inexorably attached, to which doctors, researchers and laboratories have often been woefully insensitive and unaccountable. In 1951, Henrietta Lacks, an African- American mother of five, was diagnosed with what proved to be a fatal form of cervical cancer. At Johns Hopkins, the doctors harvested cells from her cervix without her permission and distributed them to labs around the globe, where they were multiplied and used for a diverse array of treatments. Known as HeLa cells, they became one of the world's most ubiquitous sources for medical research of everything from hormones, steroids and vitamins to gene mapping, in vitro fertilization, even the polio vaccine all without the knowledge, must less consent, of the Lacks family. Skloot spent a decade interviewing every relative of Lacks she could find, excavating difficult memories and long-simmering outrage that had lay dormant since their loved one's sorrowful demise. Equal parts intimate biography and brutal clinical reportage, Skloot's graceful narrative adeptly navigates the wrenching Lack family recollections and the sobering, overarching realities of poverty and pre-civil-rights racism. The author's style is matched by a methodical scientific rigor and manifest expertise in the field. Skloot's meticulous, riveting account strikes a humanistic balance between sociological history, venerable portraiture, and Petri dish politics. Kirkus Reviews