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 ass-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, Renée, 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 manuscript 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 compassion, 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 gratitude. 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 documentary The Way of All Flesh. I also relied on the journals of Deborah Lacks, medical records, court documents, 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 Association 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 documentation 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 Institutions,” unpublished manuscript (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 Relationship 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, 1945–1963: 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 documents 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 documents housed at the Dundalk Patapsco Neck Historical Society and the North Point Library in Dundalk, Maryland.
Chapter 3: Diagnosis and Treatment
For information on the development of the Pap smear, see G. N. Papanicolaou and H. F. Traut, “Diagnostic Value of Vaginal Smears in Carcinoma of Uterus,” American Journal of Obstetrics and Gynecology 42 (1941), and “Diagnosis of Uterine Cancer by the Vaginal Smear,” by George Papanicolaou and H. Traut (1943).
Richard TeLinde’s research on carcinoma in situ and invasive carcinoma, and his concern about unnecessary hysterectomies, is documented in many papers, including “Hysterectomy: Present-Day Indications,“ JMSMS (July 1949); G. A. Gavin, H. W. Jones, and R. W TeLinde, “Clinical Relationship of Carcinoma in Situ and Invasive Carcinoma of the Cervix,“ Journal of the American Medical Association 149, no. 8 (June 2, 1952); R. W TeLinde, H. W. Jones and G. A. Gavin, “What Are the Earliest Endometrial Changes to Justify a Diagnosis of Endometrial Cancer?” American Journal of Obstetrics and Gynecology 66, no. 5 (November 1953); and TeLinde, “Carcinoma in Situ of the Cervix,” Obstetrics and Gynecology 1, no. 1 (January 1953); also the biog raphy Rich ard Wesley TeLinde, by Howard W. Jones, Georgeanna Jones, and William E. Ticknor.
For information on the history of radium and its use as a cancer treatment, see The First 100 Years; the website of the U. S. Environmental Protection Agency at epa.gov/iris/subst/0295.htm; D. J. DiSantis and D. M. DiSantis, “Radiologic History Exhibit: Wrong Turns on Radiology’s Road of Progress,” Radiographics 11 (1991); and Multiple Exposures: Chronicles of the Radiation Age, by Catherine Caufield.
Sources on the standard treatment regimen for cervical cancer in the 1950s include A. Brunschwig, “The Operative Treatment of Carcinoma of the Cervix: Radical Panhysterectomy with Pelvic Lymph Node Excision,” American Journal of Obstetrics and Gynecology 61, no. 6 (June 1951); R. W Green, “Carcinoma of the Cervix: Surgical Treatment (A Review),” Journal of the Maine Medical Association 42, no. 11 (November 1952); R. T Schmidt, “Panhysterectomy in the Treatment of Carcinoma of the Uterine Cervix: Evaluation of Results,“ JAMA 146, no. 14 (August 4, 1951); and S. B. Gus-berg and J. A. Corscaden, “The Pathology and Treatment of Adenocarcinoma of the Cervix,” Cancer 4, no. 5 (September 1951).
Growth of the L-cell (the first immortal cell line, grown from a mouse) was documented in W R. Earle et al., “Production of Malignancy in Vitro. IV. The Mouse Fibroblast Cultures and Changes Seen in Living Cells,” Journal of the NCI 4 (1943).
For information about Gey’s pre-HeLa cell culture work, see G. O. Gey, “Studies on the Cultivation of Human Tissue Outside the Body,” Wisconsin JJ. 28, no. 11 (1929); G. O. Gey and M. K. Gey, “The Maintenance of Human Normal Cells and Human Tumor Cells in Continuous Culture I. A Preliminary Report,” American Journal of Cancer 27, no. 45 (May 1936); an overview can be found in G. Gey, F Bang, and M. Gey, “An Evaluation of Some Comparative Studies on Cultured Strains of Normal and Malignant Cells in Animals and Man,” Texas Reports on Biology and Medicine (Winter 1954).
Chapter 4: The Birth of HeLa
For information on Gey’s development of the roller drum, see “An Improved Technic for Massive Tissue Culture,” American Journal of Cancer 17 (1933); for his early work filming cells, see G. O. Gey and W. M. Firor, “Phase Contrast Microscopy of Living Cells,” Annals of Surgery 125 (1946). For the abstract he eventually published documenting the initial growth of the HeLa cell line, see G. O. Gey, W. D. Coffman, and M. T. Kubicek, “Tissue Culture Studies of the Proliferative Capacity of Cervical Carcinoma and Normal Epithelium,” Cancer Research 12 (1952): 264–65. For a thorough discussion of his work on HeLa and other cultures, see G. O. Gey, “Some Aspects of the Constitution and Behavior of Normal and Malignant Cells Maintained in Continuous Culture,” The Harvey Lecture Series L (1954–55).
Chapter 5: “Blackness Be Spreadin All Inside”
TeLinde’s discussion of the “psychic effects of hysterectomy” can be found in “Hysterectomy: Present-Day Indications,“ Journal of the Michigan State Medical Society, July 1949.
Chapter 6: “Lady’s on the Phone”
Papers from the first HeLa symposium were published in “The HeLa Cancer Control Symposium: Presented at the First Annual Women’s Health Conference, Morehouse School of Medicine, October 11, 1996,” edited by Roland Pattillo, American Journal of Obstetrics and Gynecology suppl. 176, no. 6 (June 1997).
For an overview of the Tuskegee study aimed at the general public, see Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones; see also “Final Report of the Tuskegee Syphilis Study Legacy Committee,” Vanessa Northington Gamble, chair (May 20, 1996).
Chapter 7: The Death and Life of Cell Culture
For the television segment featuring George Gey, see “Cancer Will Be Conquered,” Johns Hopkins University: Special Collections Science Review Series (April 10, 1951).
For additional reading on the history of cell culture, see Culturing Life: How Cells Became Technologies, by Hannah Landecker, the definitive history; also see The Immortalists: Charles Lindberg, Dr. Alexis Carrel, and Their Daring Quest to Live Forever, by David M. Friedman. For a general over view of Hopkins’s contributions to cell culture, see “History of Tissue Culture at Johns Hopkins,” Bulletin of the History of Medicine (1977).
To re-create the story of Alexis Carrel and his chicken heart, I relied on these sources and many others: A. Carrel and M. T Burrows, “Cultivation of Tissues in Vitro and Its Technique,” Journal of Experimental Medicine (January 15, 1911); “On the Permanent Life of Tissues Outside of the Organism,” Journal of Experimental Medicine (March 15, 1912); Albert H. Ebeling, “A Ten Year Old Strain of Fibroblasts,” Journal of Experimental Medicine (May 30, 1922), and “Dr. Carrel’s Immortal Chicken Heart,” Scientific American (January 1942); “The ‘Immortality’ of Tissues,” Scientific American (October 26, 1912); “On the Trail of Immortality,” McClure’s (January 1913); “Herald of Immortality Foresees Suspended Animation,” Newsweek (December 21, 1935); “Flesh That Is Immortal,” World’s Work 28 (October 1914); “Carrel’s New Miracle Points Way to Avert Old Age!” New York Times Magazine (September 14, 1913); Alexis Carrel, “The Immortality of Animal Tissue, and Its Significance,” The Golden Book Magazine 7 (June 1928); and “Men in Black,” Time 31, number 24 (June 13, 1938). The Nobel Prize website also contains much useful information about Carrel.
For a history of cell culture in Europe, see W. Duncan, “The Early History of Tissue Culture in Britain: The Interwar Years,” Social History of Medicine 18, no. 2 (2005), and Duncan Wilson, “‘Make Dry Bones Live’: Scientists’ Responses to Changing Cultural Representation of Tissue Culture in Britain, 1918–2004,” dissertation, University of Manchester (2005).
The conclusion that Carrel’s chicken-heart cells were not actually immortal comes from interviews with Leonard Hayflick; also J. Witkowski, “The Myth of Cell Immortality,” Trends in Biochemical Sciences (July 1985), and J. Witkowski, letter to the editor, Science 247 (March 23, 1990).
Chapter 9: Turner Station
The newspaper article that documented Henrietta’s address was Jacques Kelly, “Her Cells Made Her Immortal,” Baltimore Sun, March 18, 1997. The article by Michael Rogers was “The Double-Edged Helix,” Rolling Stone (March 25, 1976).
Chapter 10: The Other Side of the Tracks
For reports of the decline of Clover, see, for exam
ple, “South Boston, Halifax County, Virginia,” an Economic Study by Virginia Electric and Power Company; “Town Begins to Move Ahead,” Gazette-Virginian (May 23, 1974); “Town Wants to Disappear,” Washington Times (May 15, 1988); and “Supes Decision Could End Clover’s Township,” Gazette-Virginian (May 18, 1998); “Historical Monograph: Black Walnut Plantation Rural Historic District, Halifax County, Virginia,” Old Dominion Electric Cooperative (April 1996). Population figures are available at census.gov.
The Immortal Life of Henrietta Lacks Page 34