Years later, I asked Wayne Grody, who was in the thick of the debate in the nineties, why the congressional recommendations and NBAC report seemed to have vanished.
“It’s weird, but I have no idea,” he said. “If you can figure that out, I’d like to know. We all just wanted to forget about it, like if we ignored it, maybe it would just go away.” But it didn’t. And given the steady flow of court cases related to tissues, the issue isn’t going away anytime soon.
Despite all the other cases and the press they’ve received, the Lacks family has never actually tried to sue anyone over the HeLa cells. Several lawyers and ethicists have suggested to me that since there is no way to anonymize HeLa cells at this point, research on them should be covered by the Common Rule. And since some of the DNA present in Henrietta’s cells is also present in her children, it’s possible to argue that by doing research on HeLa, scientists are also doing research on the Lacks children. Since the Common Rule says that research subjects must be allowed to withdraw from research at any time, these experts have told me that, in theory, the Lacks family might be able to withdraw HeLa cells from all research worldwide. And in fact, there are precedents for such a case, including one in which a woman successfully had her father’s DNA removed from a database in Iceland. Every researcher I’ve mentioned that idea to shudders at the thought of it. Vincent Racaniello, a professor of microbiology and immunology at Columbia University, who once calculated that he’s grown about 800 billion HeLa cells for his own research, says that restricting HeLa cell use would be disastrous. “The impact that would have on science is inconceivable,” he said.
As for the Lackses, they have few legal options. They couldn’t sue over the cells being taken in the first place for several reasons, including the fact that the statute of limitations passed decades ago. They could attempt to stop HeLa research through a lawsuit, arguing that it’s impossible to anonymize Henrietta’s cells, which contain their DNA. But many legal experts I’ve talked with doubt such a case would succeed. Regardless, the Lackses aren’t interested in stopping all HeLa research. “I don’t want to cause problems for science,” Sonny told me as this book went to press. “Dale wouldn’t want that. And besides, I’m proud of my mother and what she done for science. I just hope Hopkins and some of the other folks who benefited off her cells will do something to honor her and make right with the family.”
Acknowledgments
Time and time again, I saw people energized by the story of Henrietta and her cells—energized, and filled with the desire to do something to show their thanks for her contribution to science, and make amends to her family. Many of those people put that energy into helping me with this book. My gratitude goes out to everyone who devoted time, knowledge, money, and heart to this project. I do not have room to name all of you here, but I could not have written this book without you.
First and foremost, I owe endless thanks to Henrietta Lacks’s family.
Deborah was the soul of this book—her spirit, her laughter, her pain, her determination, and her unbelievable strength were an inspiration that helped keep me working all these years. I feel deeply honored to have been part of her life.
I thank Lawrence and Zakariyya for their trust and their stories, and Sonny, for seeing the value of this project and being its backbone within the family. I thank him for his honesty, his never-ending optimism, and for believing I could and would write this book.
Deborah’s grandsons, Davon and Alfred, were incredibly supportive of Deborah’s quest to learn about her mother and her sister. I thank them for keeping us laughing and for answering my many questions. Bobbette Lacks, a strong woman who has helped hold the Lacks family together for decades, put up with hours of interviews and many requests for documents, and she never held back when it came to sharing her stories. I’m grateful to Sonny’s ever-reliable daughter, Jeri Lacks-Whye, who tracked down facts and photos, and often wrangled her big extended family on my behalf. I thank her and her mother, Shirley Lacks, as well as Lawrence’s granddaughters Erika Johnson and Court-nee Simone Lacks, and Deborah’s son, Alfred Carter Jr., for their openness and enthusiasm. James Pullum’s support was unwavering; I thank him for his stories, his laughter, and his prayers. The same is true for Gary Lacks, who sang beautiful hymns into my telephone voice mail, and never failed to serenade me on my birthday.
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 Sturdivant, 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 manuscript 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 workspace 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 gratitude (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 manuscript, 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 asset.
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.
&n
bsp; Christoph Lengauer’s passion 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 Washington, 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 friendship. 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 entrée 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 passion.
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 documents from her personal archive), Joanne Manaster (aka @sciencegoddess), 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 documents for me. I feel very fortunate to call him a friend.
My graduate assistant 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 assistant 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 documents, 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 friendship along the way, particularly Jad Abumrad, Alan Burdick, 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 Institute, 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 gratitude 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 friendship.
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 publishing 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 publishing house as devoted as Crown has been. I’m deeply grateful to everyone on Team Immortal at Crown: their passion for this book and the incredible work they did to send it into the world as best they could has been astonishing 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 Bron stein, Stephanie Chan, Whitney Cookman, Jill Flaxman, 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 classrooms. Thanks also to the Random House sales force, particularly John Hastie, Michael Kindness, Gianna LaMorte, an
d 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 friendship and fun, beautiful property to walk my dogs on, and Baristas and JJS Massage, my favorite café in the world, where Jill kept me well fed and caffeinated, and Jeff massaged 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 godson, Aryo, brought much joy. Quail’s mother, Terry Rogers, always an inspiration, also provided wonderful feedback on this book.
The Immortal Life of Henrietta Lacks Page 33