The Immortal Life Of Henrietta Lacks Part 41

Re-creating the life of Henrietta Lacks wouldn't have been possible without the generous help of her family, friends, and neighbors, particularly Fred Garret, Howard Grinnan, Hector "Cootie" Henry, Ben Lacks, Carlton Lacks, David "Day" Lacks Sr., Emmett Lacks, Georgia Lacks, Gladys Lacks, Ruby Lacks, Thurl Lacks, Polly Martin, Sadie St.u.r.divant, John and Dolly Terry, and Peter Wooden. Special thanks to Cliff Garret, a wonderful storyteller who helped bring Henrietta's youth and old Clover to life for me, and always made me smile. Thanks also to Christine Pleasant Tonkin, a distant relative of Henrietta Lacks who traced the Pleasant side of Henrietta's family back to its slave ancestors and generously shared her research with me; she also read the ma.n.u.script and provided many valuable suggestions. And to Courtney Speed for her enthusiasm, for sharing her story, and for gathering others to talk with me.

I feel lucky to have found Mary Kubicek, whose sharp memory, tireless patience, and enthusiasm were invaluable. The same is true of George Gey Jr. and his sister, Frances Greene. I'm very fortunate that they spent much of their childhood in the Gey lab with their parents and were able to bring those years to life for me. Thanks also to Frances's husband, Frank Greene.

I'm very grateful to the many librarians and archivists who took the time to track down old newspaper and journal articles, photos, videos, and other resources. Special thanks to Andy Harrison, curator of the George Gey collection at the Alan Mason Chesney Medical Archives; to former University of Pittsburgh library sciences students Amy Notarius and Elaina Vitale; to Frances Woltz, who provided me with a wealth of information and stories; and to Hap Hagood, Phoebe Evans Letocha, and Tim Wisniewski. David Smith at the New York Public Library helped me as he has many other lucky writers, and secured me a quiet works.p.a.ce in the library's Wertheim Study. David Rose, archivist for the March of Dimes Foundation, took such a deep interest in this book that he conducted hours' worth of helpful research on my behalf. To him I owe tremendous grat.i.tude (and lunch).

Hundreds of people gave generously of their time for interviews, and I thank them all, particularly George Annas, Laure Aurelian, Baruch Blumberg, Ellen Wright Clayton, Nathanial Comfort, Louis Diggs, Bob Gellman, Carol Greider, Michael Grodin, Wayne Grody, Cal Harley, Robert Hay, Kathy Hudson, Grover Hutchins, Richard Kidwell, David Korn, Robert Kurman, John Masters, Stephen O'Brien, Anna O'Connell, Robert Pollack, John Rash, Judith Greenberg, Paul Lurz, Todd Savitt, Terry Sharrer, Mark Sobel, Robert Weir, Barbara Wyche, and Julius Youngner. For their time, encouragement, and expertise I give special thanks to Lori Andrews, Ruth Faden, and Lisa Parker, who spurred my thinking with early conversations, and read the ma.n.u.script, offering helpful comments. Thanks also to Duncan Wilson, who provided me with an early version of his dissertation and some very helpful research materials.

Several scientists deserve special thanks: Howard W Jones, Victor McKusick, and Susan Hsu shared invaluable memories; all were unflinchingly honest and patient with my many questions. Leonard Hayflick spent more than a dozen hours on the phone with me, often taking my calls when he was traveling or in the midst of his own work. His memory and scientific expertise were a tremendous resource. He offered extremely valuable comments on a draft of this book, as did Robert Stevenson, who supported this project from the beginning, when not all scientists did. He was an enormous a.s.set.

I'm grateful to Roland Pattillo for taking the time to figure me out, for believing in me, for schooling me, and for helping me contact Deborah. He and his wife, Pat, opened themselves and their home to me early on, and have been supportive since. They also read a draft of the book and offered helpful suggestions.

Christoph Lengauer's pa.s.sion and his willingness to be swept into the Lackses' story were inspiring. I thank him for his patience, openness, and forward thinking. He answered many questions and read this book in draft form, offering honest and extremely helpful feedback.

Several writers who have covered the HeLa story were generous with their time. Michael Gold wrote about the contamination story in great detail in his book, A Conspiracy of Cells, which was a wonderful resource. It was always a joy to talk with Michael Rogers, whose 1976 Rolling Stone article about HeLa was an important resource when I began working on this book. Harriet Was.h.i.+ngton, author of Medical Apartheid, has been a wonderful champion of this book; she talked with me about her experience interviewing the Lacks family for a 1994 Emerge article, and offered helpful comments on a draft of the book.

Special thanks to Ethan Skerry and Lowenstein Sandler PC for the pro bono work they did to help me establish the Henrietta Lacks Foundation. Thanks to the University of Memphis for a grant that helped with final research and fact-checking for this book. I'm grateful to both my students and colleagues, particularly Kristen Iversen and Richard Bausch, wonderful teachers, writers, and friends. Special thanks to John Cal de-razzo and Lee Gutkind for more than a decade of encouragement, support, and close friends.h.i.+p. John realized I was a writer long before I did, and has always been an inspiration. Lee taught me to care deeply about story structure and gave me entree into the worlds of professional writing, and working at 5:00 A.M. Many thanks also to Donald Defler, for introducing me to Henrietta, and teaching biology with pa.s.sion.

This book was intensively fact-checked. As part of that process, many experts read it before publication to help ensure its accuracy. I thank them for their time and valuable feedback: Erik Angner (a close friend and strong supporter of this book from its inception), Stanley Gartler, Linda MacDonald Glenn, Jerry Menikoff, Linda Griffith, Miriam Kelty (who also provided helpful doc.u.ments from her personal archive), Joanne Manaster (aka @scienceG.o.ddess), Alondra Nelson (who deserves special thanks for her honesty, and for saving me from a serious omission), Rich Purcell, Omar Quintero (who also provided beautiful HeLa photos and video footage for the book and its website), Laura Stark, and Keith Woods. Thanks also to the many people who read selected chapters, particularly Nathaniel Comfort and Hannah Landecker (whose extensive work on HeLa and the history of cell culture, especially her book, Culturing Life, was a tremendous resource).

Every writer should be lucky enough to find an expert source as generous with his time as Vincent Racaniello. He read multiple drafts, sent many resources, and offered invaluable feedback. His belief in the importance of communicating science to the general public in an accurate and accessible way (witnessed in his "This Week in Virology" podcasts at TWiV.tv and his Twitter feed @profvrr) is a great model for other scientists. The same is true for David Kroll (@abelpharmboy), a big supporter of this book, who writes about science on his blog, Scienceblogs.com/terrasig. He provided helpful feedback and research material, and even took his scanner to a library to gather a few key doc.u.ments for me. I feel very fortunate to call him a friend.

My graduate a.s.sistant Leigh Ann Vanscoy dove into her job with great enthusiasm, working hard to track down photos and permissions, and helping with fact-checking during the final hours. Pat Walters (patwalters.net), research a.s.sistant extraordinaire, talented young writer and reporter, and good friend, fact-checked this entire book and devoted himself to the process with unparalleled enthusiasm, precision, and attention to detail. He dug out hard-to-find facts, and his work saved me from numerous errors (including my apparent inability to do basic math). This book benefited greatly from his contributions. I'm lucky to have found him, and I look forward to seeing his bright future unfold.

Several other people helped with research and fact-checking and I thank them all. The great Charles Wilson at The New York Times Magazine fact-checked the portions of this book that originally appeared in the magazine, and was a joy to work with. Heather Harris acted as my stand-in when I couldn't get to Baltimore, doggedly gathering court and archival doc.u.ments, often on short notice. Av Brown of yourmaninthestacks.com was, indeed, my man in the stacks, always thorough and fast with research requests. Paige Williams swooped in to help with some last-minute fact-checking in the midst of her own busy writing career. And my longtime friend Lisa Thorne deserves special thanks (and probably some wrist splints) for transcribing the majority of my interview tapes and offering wonderful commentary on what she heard.

I'm thankful to many great reporters, writers, and editors who offered encouragement, advice, feedback, and friends.h.i.+p along the way, particularly Jad Ab.u.mrad, Alan Burd.i.c.k, Lisa Davis, Nicole Dyer, Jenny Everett, Jonathan Franzen, Elizabeth Gilbert, Cindy Gill, Andrew Hearst, Don Hoyt Gorman, Alison Gwinn, Robert Krulwich, Robin Marantz Henig, Mark Jannot, Albert Lee, Erica Lloyd, Joyce Maynard, James McBride, Robin Michaelson, Gregory Mone, Michael Moyer, Scott Mowbray, Katie Orenstein, Adam Penenberg, Michael Pollan, Corey Powell, Mark Rotella, Lizzie Skurnick, Stacy Sullivan, Paul Tough, Jonathan Weiner, and Barry Yeoman. Special thanks to Dinty W. Moore, Diana Hume George, and the many other wonderful writers I taught with at the now-sadly-defunct Mid-Atlantic Creative Nonfiction Summer Writers Conference. I miss you all. Thanks also to the editors who worked with me on my early stories related to the book: Patti Cohen at the New York Times, Sue De Pasquale at Johns Hopkins Magazine, Sally Flecker at Pitt Magazine, and James Ryerson at The New York Times Magazine, who always makes my work better. Also to my fellow bloggers on ScienceBlogs.com, the ever helpful and inspiring Invisible Inst.i.tute, the amazing Birders, and my wonderful Facebook and Twitter friends, who provided resources, laughter, encouragement, and celebration of moments big and small. Thanks also to Jon Gluck for helpful early editorial advice. And to Jackie Heinze, who amazingly gave me her car so I could disappear into the middle of nowhere for months to write. Special thanks to Albert French, who helped me take the first difficult steps toward writing this book by challenging me to a race and letting me win.

I owe deep grat.i.tude to all of my former colleagues on the National Book Critics Circle board of directors, whose devotion to great books helped keep me inspired, motivated, and thinking critically. Special thanks to Rebecca Miller, Marcela Valdes, and Art Winslow, who provided years of encouragement, read drafts of the book, and offered insightful comments. As did John Freeman, who I thank for the hours we spent talking about writing and this book, and for Ford and friends.h.i.+p.

My agent, Simon Lipskar at Writers House, has my endless thanks for fighting with and for me when others wouldn't, for being a rock star and a friend. I knew there was a reason I liked you. As is true for many books these days, mine struggled to find its way to press. Three publis.h.i.+ng houses and four editors later, I feel extremely lucky to have landed at Crown with Rachel Klayman as my editor. She inherited my book, immediately adopted it as her own, and never faltered in her support of it. She devoted more of her time and heart to this book than I could have dreamed of. Every writer should be fortunate enough to work with such a talented editor, and to have a publis.h.i.+ng house as devoted as Crown has been. I'm deeply grateful to everyone on Team Immortal at Crown: their pa.s.sion for this book and the incredible work they did to send it into the world as best they could has been astonis.h.i.+ng and humbling. Special thanks to Tina Constable for her undying support, and for being there for the long haul; to Courtney Greenhalgh, my wonderful and tireless publicist; to Patty Berg, for her creative pursuit of every marketing opportunity; and to Amy Boorstein, Jacob Bronstein, Stephanie Chan, Whitney Cookman, Jill Flaxman, Matthew Martin, Philip Patrick, Annsley Rosner, Courtney Snyder, Barbara Sturman, Katie Wainwright, and Ada Yonenaka. I feel so fortunate to have worked with you all. The same is true of Leila Lee and Michael Gentile in the academic marketing department at Random House, who believed in this book and worked hard to help get it into cla.s.srooms. Thanks also to the Random House sales force, particularly John Hastie, Michael Kindness, Gianna LaMorte, and Michele Sulka, who embraced this book and ran with it.

I'm deeply grateful to Erika Goldman, Jon Michel, and Bob Podrasky, all formerly at W. H. Freeman, for believing in me and this book from the beginning, and encouraging me to fight for what I wanted it to be. Thanks also to Louise Quayle for her help early in the process, and to Caroline Sincerbeaux, for always loving this book, and for bringing it to Crown where it found a wonderful home.

Betsy and Michael Hurley and the Lancaster Literary Guild deserve far more thanks than I could possibly convey here. They gave me a key to writer heaven: a beautiful retreat in the hills of West Virginia, where I was free to write without distraction, often for months on end. The world would be a better place if more organizations like the Lancaster Literary Guild existed to support the arts. Along with that retreat house came amazing neighbors: Joe and Lou Rable kept me safe, full, happy, and loved. Jeff and Jill Shade helped me stay human during months of endless work, providing friends.h.i.+p and fun, beautiful property to walk my dogs on, and Baristas and JJS Ma.s.sage, my favorite cafe in the world, where Jill kept me well fed and caffeinated, and Jeff ma.s.saged the knots he called "writers' blocks" from my arms, poured drinks when I needed them, and talked with me for hours about my book. I thank the town of New Martinsville, West Virginia, for taking me in. And Heather at The Book Store, who tracked down every good novel she could find with a disjointed structure, all of which I devoured while trying to figure out the structure of this book.

I am lucky to have many wonderful friends who were tireless cheerleaders for this project, despite the number of times they heard me say, "I can't, because I have to work on my book." I thank them all, particularly Anna Bargagliotti, Zvi Biener, Stiven Foster (Celebration Committee!), Ondine Geary, Peter Machamer, Jessica Mesman (Foo!), Jeff and Linda Miller, Elise Mittleman (P and PO!), Irina Reyn, Heather Nolan (who also read an early draft and offered helpful feedback), Andrea Scarantino, Elissa Thorndike, and John Zibell. I'm grateful to Gual tiero Piccinini for encouragement and support early in the book process. Special thanks to my dear friend Stephanie Kleeschulte, who brings me joy and keeps me young. And to Quail Rogers-Bloch, for our history, for laughter, wine, and stupid movies in the midst of madness (Yes he did, sir!). Without her, I wouldn't be who I am today. She gave me a home to return to each night after my work in Baltimore, talked me through the hardest parts of this book, rescued me when I got stranded or ran out of money, and always offered wise feedback on drafts (some of which she listened to over the phone). Her wonderful husband, Gyon, fed me mangoes when I was exhausted, and their son, my G.o.dson, Aryo, brought much joy. Quail's mother, Terry Rogers, always an inspiration, also provided wonderful feedback on this book.

I'm very lucky to count Mike Rosenwald (mikerosenwald.com) as one of my closest friends. He's an inspiration as a writer, reporter, and reader. He's been with me every step of this book with encouragement, commiseration, advice, and a few much-needed a.s.s-kickings. He read many drafts (and listened to several sections over the phone), always offering helpful feedback. I look forward to returning the favor.

My family was the backbone of this book: Matt, the best big brother a girl could hope for, supported me with long talks and laughter and always reminded me to watch out for myself. My wonderful nephews, Nick and Justin, never fail to bring me joy. They spent far too many holidays without their aunt because of this book, and I look forward to making up for lost time. My sister-in-law, Renee, has provided never-ending support for this book; she is not only a good friend, but an eagle-eyed reader with an incredible talent for spotting errors and inconsistencies. The same is true of my wonderful stepmother, Beverly, who read several drafts, giving invaluable support and insight. I also benefited greatly from her sensitivity and training as a social worker as I navigated the complexities of the Lackses' experience.

My parents and their spouses deserve to have entire wings of this book named after them for all the support they've given me over the years. My mother, Betsy McCarthy, has never faltered in her belief in me and this book. She's kept me sane through pep talks, reality checks, and the gift of knitting, a family tradition I treasure. Her drive, her artistry, and her determination have been a tremendous guide for me. She and her husband, Terry, encouraged me during the hardest times, read multiple drafts of the book, and provided wise and helpful feedback.

I am endlessly thankful to my father, Floyd Skloot, for teaching me to see the world with a writer's eyes, for inspiring me with his many wonderful books, and for treating this one as if it were his own. He has always encouraged me to follow my art, and to fight for what I believed it could be, even when that meant taking risks like quitting a stable job to freelance. He read this book six times before publication (and that's not counting dozens of individual chapters and sections he read before that). He is not only my father but my colleague, my selfless publicist, and my friend. For that I am lucky beyond measure.

And then there's David Prete, my Focus (you know). He read this ma.n.u.script when it was far longer than any book should ever be, and used his rich talent as a writer and an actor to help me get it to a manageable size. With his grace and support, his heart, his compa.s.sion, and his amazing cooking, he also kept me alive and happy. Even when The Immortal Book Project of Rebecca Skloot took over our home and lives, his support never wavered. He has my love and my grat.i.tude. I am a very lucky woman.

Notes

The source materials I relied on to write this book filled multiple file cabinets, and the hundreds of hours of interviews I conducted-with members of the Lacks family, scientists, journalists, legal scholars, bioethicists, health policy experts, and historians-fill several shelves worth of notebooks. I have not listed all of those experts in these notes, but many are thanked in the acknowledgments or cited by name in the book.

Because my sources are too extensive to list in their entirety, these notes feature a selection of some of the most valuable, with a focus on those that are publicly available. For additional information and resources, visit RebeccaSkloot.com.

These notes are organized by chapter, with two exceptions: Since the Lacks family and George Gey appear throughout many chapters, I have consolidated my notes about them and listed them immediately below. If a chapter is not listed in the notes, it means the source material for that chapter is described in these consolidated entries about Gey and the Lackses.

Henrietta Lacks and Her Family

To re-create the story of Henrietta's life and the lives of her relatives, I relied on interviews with her family, friends, neighbors, and experts on the time and place in which they lived, as well as family audio and video recordings, and unedited B-roll from the BBC doc.u.mentary The Way of All Flesh. I also relied on the journals of Deborah Lacks, medical records, court doc.u.ments, police records, family photographs, newspaper and magazine reports, community newsletters, wills, deeds, and birth and death certificates.

George Gey and His Lab

To re-create the lives and work of George and Margaret Gey, I relied on the holdings of the George Gey archives at the Alan Mason Chesney Medical Archives (AMCMA) at Johns Hopkins Medical School; the Tissue Culture a.s.sociation Archives (TCAA) at the University of Maryland, Baltimore County; the personal archives of Gey's family; as well as on academic papers, and interviews with family, colleagues, and scientists in the fields of cancer research and cell culture.

Prologue

The estimate of the possible weight of HeLa cells comes from Leonard Hayflick, who calculated the greatest possible weight potential of a normal human cell strain as 20 million metric tons and says HeLa's potential would be "infinitely greater" since it's not bound by the Hayflick limit. As Hayflick wrote to me in an email: "If we were to grow HeLa for just 50 population doublings it would yield 50 million metric tons if all the cells were saved. Clearly that is impractical to do." For more information on the growth potential of a normal cell, see Hayflick and Moorehead, "The Serial Cultivation of Human Diploid Cell Strains," Experimental Cell Research 25 (1961).

For the articles about the Lacks family I refer to, see "Miracle of HeLa," Ebony (June 1976) and "Family Takes Pride in Mrs. Lacks' Contribution," Jet (April 1976).

PART ONE: LIFE

Chapter 1: The Exam

Conflicting dates have been reported for Henrietta's first visit to Johns Hopkins; the date most commonly cited is February 1, 1951. The lack of clarity surrounding the date results from a transcription error noted by her doctor on February 5. Elsewhere her records indicate that her tumor was first tested on January 29, so I have used that date.

For doc.u.mentation of the history of Johns Hopkins (in this and later chapters), see the AMCMA, as well as The Johns Hopkins Hospital and the Johns Hopkins University School of Medicine: A Chronicle, by Alan Mason Chesney, and The First 100 Years: Department of Gynecology and Obstetrics, the Johns Hopkins School of Medicine, the Johns Hopkins Hospital, edited by Timothy R. B. Johnson, John A. Rock, and J. Donald Woodruff.

Information here and in later chapters regarding segregation at Johns Hopkins came from interviews as well as from Louise Cavagnaro, "The Way We Were," Dome 55, no. 7 (September 2004), available at hopkinsmedicine.org/dome/0409/featurei.cfm; Louise Cavagnaro, "A History of Segregation and Desegregation at The Johns Hopkins Medical Inst.i.tutions," unpublished ma.n.u.script (1989) at the AMCMA; and "The Racial Record of Johns Hopkins University," Journal of Blacks in Higher Education 25 (Autumn 1999).

Sources on the effects segregation had on health-care delivery and outcomes include: The Strange Career of Jim Crow, by C. Vann Woodward; P. Preston Reynolds and Raymond Bernard, "Consequences of Racial Segregation," American Catholic Sociological Review 10, no. 2 (June 1949); Albert W Dent, "Hospital Services and Facilities Available to Negroes in the United States," Journal of Negro Education 18, no. 3 (Summer 1949); Alfred Yankauer Jr., "The Relations.h.i.+p of Fetal and Infant Mortality to Residential Segregation: An Inquiry into Social Epidemiology," American Sociological Review 15, no. 5 (October 1950); and "Hospitals and Civil Rights, 19451963: The Case of Simkins v. Moses H. Cone Memorial Hospital," Annals of Internal Medicine 126, no. 11 (June 1, 1997).

Henrietta's medical records, provided to me by her family, are not publicly available, but some information on her diagnosis can be found in Howard W. Jones, "Record of the First Physician to see Henrietta Lacks at the Johns Hopkins Hospital: History of the Beginning of the HeLa Cell Line," American Journal of Obstetrics and Gynecology 176, no. 6 (June 1997): S227-S228.

Chapter 2: Clover

Information on the history of Virginia tobacco production came from the Virginia Historical Society, the Halifax County website, archival doc.u.ments and news articles at the South Boston Library, and several books, including Cigarettes: Anatomy of an Industry, from Seed to Smoke, by Tara Parker Pope, an overview of tobacco history for the general public.

Several books helped me reconstruct the era and places in which Henrietta lived, including Country Folks: The Way We Were Back Then in Halifax County, Virginia, by Henry Preston Young, Jr; History of Halifax, by Pocahontas Wight Edmunds; Turner Station, by Jerome Watson; Wives of Steel, by Karen Olson; and Making Steel, by Mark Reutter. The history of Turner Station is also chronicled in news articles and doc.u.ments housed at the Dundalk Patapsco Neck Historical Society and the North Point Library in Dundalk, Maryland.