The Immortal Life of Henrietta Lacks (47 page)

Tissue-rights activists argue that it’s essential to disclose any potential financial gain that might come from people’s tissues. “This isn’t about trying to get patients a cut of the financial action,” says Lori Andrews. “It’s about allowing people to express their desires.” Clayton agrees, but says, “The fundamental problem here isn’t the money; it’s the notion that the people these tissues come from don’t matter.”

After the Moore case, Congress held hearings and commissioned reports that uncovered the millions of dollars being made from human tissue research, and it formed a special committee to assess the situation and recommend how to proceed. Its findings: the use of human cells and tissues in biotechnology holds “great promise” for improving human health, but raises extensive ethical and legal questions that “have not been answered” and to which “no single body of law, policy or ethics applies.” This, they said, must be clarified.

In 1999, President Clinton’s National Bioethics Advisory Commission (NBAC) issued a report saying that federal oversight of tissue research was “inadequate” and “ambiguous.” It recommended specific changes that would ensure patients’ rights to control how their tissues were used. It skirted the issue of who should profit from the human body, saying simply that the issue “raises a number of concerns,” and should be investigated further. But little happened.

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

T
ime 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.

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.