This book began as a challenge to me from historian Darlene Clark Hine to write about Nurse Rivers after we both saw the Atlanta staging of David Feldshuh’s play Miss Evers’ Boys, a fictionalized telling of the Tuskegee Syphilis Study story. What I thought was going to be just a short paper on Rivers’ involvement in the study just kept on growing as my visits to Tuskegee for research hooked me on the community and its history. I have taught the study in my classes and spoken about it in a wide range of forums, including professional meetings, a convention of the Public Health Service Commissioned Officers, a meeting of the Boston Visiting Nurse Association, and a talk-radio show aimed at Chicago’s black community. In doing this, the necessity to provide more information and explore multiple viewpoints became obvious. This collection is my effort to make a wide variety of materials available to anyone who wants to know more and to think about what it means. It would not have happened without Darlene Clark Hine’s faith in me as a scholar and stand-up woman. I cannot begin to thank her for this support.
Many other people made this book possible and provided support in large and small ways. Evelynn M. Hammonds traded stories and insights regularly. Dixie Dysart gave me a home in Alabama, taught me to appreciate southern cooking, sent me clippings, and introduced me to the joys of playing bar trivia with selected members of the Auburn University history department. Cynthia Wilson and Daniel Williams, the archivists of the Washingtonian Collection at Tuskegee University, were generous with their sage advice and finding skills. Cynthia Wilson cares passionately about Tuskegee, was a wonderful guide to its mores and history, and in this long process became a good friend. James H. Jones, the author of Bad Blood, was unstinting in his willingness to share information and to push me to make hard decisions. In this process we got to spend time together in Tuskegee, in the White House for the federal apology, and at an Astros’ game. Not a bad deal. Allan M. Brandt, also a historian of the study, willingly agreed to include this complicated project in his series.
I am very grateful to Wellesley College for providing funds from the faculty grants program that made my travel possible, a sabbatical leave a reality, and the extensive permissions costs payable. In addition, funds from two of the “folding chairs” I held at Wellesley made research easier. My departmental colleagues—Rosanna Hertz, Elena Creef, Geeta Patel, Lidwien Kapteijns—listened forever. Students in my classes were great guides to the questions that needed to be asked. Wellesley College graduates worked on the multiple details of this book with me. Kristel Maney and Jennifer Murray were invaluable assistants, as Maggie Felts and Sally Coombs had been earlier in the process.
I wish to thank Skip Gates and the staff and fellows of the Du Bois Institute for Afro-American Research, where I spent a sabbatical year getting much of this organized. I also had support from a grant from the American Association of University Women and the National Endowment for the Humanities for another book on Tuskegee I am still writing, but which jump-started this collection. Sian Hunter, my editor at the University of North Carolina Press, waited patiently for the book. She and her staff guided me through the myriad details with thoughtfulness, patience, and care. Pam Upton shepherded the volume through the production process with great understanding of the realities of daily life.
As always, family and friends made this work possible. My children, Mariah and Micah Sieber, put up with my obsession with the study and the endless hours this project took. My daughter managed to graduate from college while I wasn’t looking, and my son entered high school while telling the Tuskegee story better than I can. My colleague and companion Bill Quivers kept me focused on what is important and why it matters.
Over the years it took to put this volume together, I lost two close friends who cared deeply about ethical research and history. I am sorry that Bob Cassell did not live long enough to see this collection finished, but I am grateful for the time he took to discuss medical research and public health with me. Rachel Fruchter, a superb community public health organizer and epidemiologist, was killed tragically in a biking accident. She served as a model of a research scientist committed to ethical research and the health care of immigrants, the poor, and women.
I have tried to use all the sage advice I received in making the hard decisions over what should or should not be included in this book. I did my best to provide balance and to accept what I could or could not get permission to use. I am now an expert (alas) on the complications of the permissions process and its costs.
For those who do health-care research or are its subjects, I hope this volume serves as a warning and guidepost. For the survivors of the study and their heirs, families, and friends, I hope this book is part of the justice you deserve.