Moments of Truth in Genetic Medicine

Acknowledgments

A C K N O W L E D G M E N T S My first and most profound debt is to Dorothy Nelkin. Dot was my mentor, coauthor, and friend. She read and commented on most of what I have written , not only for this project but for almost everything I have worked on over the past two decades. She was involved with this study from its earliest stages to the near-final manuscript, reading many chapters and providing detailed suggestions and comments. Her clear-eyed assessments were invaluable , her judgments impeccable. Her courage throughout her life was a gift to all who knew her. For me, many times, she held up the sky, and I will miss her always. My colleagues in the Department of the History and Sociology of Science at the University of Pennsylvania have been supportive, tolerant, skeptical, and engaged. Conversations, observations, criticisms, and feedback from Robert Aronowitz, Ruth Cowan, Steve Feierman, Riki Kuklick, and Janet Tighe have been particularly helpful. Charles Rosenberg, back in the old days when he was still at Penn, read several versions of some chapters and suggested many improvements. Then, after he had departed for Harvard, he carefully read the entire manuscript in near-final form and proposed a shift of perspective that greatly improved the final version. He has encouraged my work on this project throughout its long gestation, and my debts to Charles over the years are profound. Graduate students (past and present) at Penn, including Josh Berson, Paul Burnett, Eve Buckley, Betsy Hanson, Andi Johnson, Joanna Kempner, Susan Miller, Chloe Silverman, Jeff Tang, Dominique Tobbell, Roger Turner, and Audra Wolfe, provided insights, support, teaching assistance, and encouragement on many levels. Chloe Silverman’s work on autism was a constant source of inspiration, helping me think about patients and biomedicine in productive ways. Jon Merz, at the Penn Center for Bioethics, kept me aware of alternative ways of interrogating contemporary genomics, and through the generosity of Art Caplan and the Penn Center for Bioethics I had a quiet place to work during a sabbatical leave. Other colleagues politely listened to me complain and fret, including Mark Adams, David Barnes, Robert Kohler, Nathan Ensmenger, and Nathan Sivin. Patricia Johnson provided administrative and social support. At Johns Hopkins, Barton Childs corrected and inspired me and was patient with my questions. I suspect that Barton is a few decades (centuries?) ahead of his time, and it was a great privilege to be able to draw on his insights . Scott Gilbert, at Swarthmore College, read chapters, provided feedback , and laughed at the jokes. He and Barbara Kimmelman, at Philadelphia University, also met me for bagels and conversation once a month during a particularly confused period early in the project. I benefited from ongoing feedback from Rayna Rapp, whose commitment to justice I greatly admire, and from Vassiliki Betty Smocovitis, who kept this project on track at several points. Faye Ginsburg was an informant, commentator, and critical supporter, sending website addresses, e-mail threads, amazing quotes, and sometimes T-shirts. Karen-Sue Taussig provided commentary, criticism, encouragement, and occasional dinners out. I am also deeply indebted to Diane Paul and Jonathan Marks, both of whom exemplify critically engaged scholarship. Some people who played a role in the events I explore read and commented on chapters or spoke with me about their research and their fields. Barton Childs helped me understand the rise of PKU testing. John Hamerton ’s comments on the cytogenetics chapter were perceptive and extremely helpful. Clarke Fraser generously read and commented on every chapter, caught many infelicities, and encouraged and praised what was worthwhile. I am deeply indebted to him; he was an excellent critic in every way. I also drew on the insights of Felicia Axelrod, Joseph Dancis, Irving Gottesman, x A C K N O W L E D G M E N T S Gladys Gropper, Alfred Knudson, Barbara Migeon, William Pollin, Artemis Simopoulis, and Conrad Riley. Thanks are due to Joyce and Richard Rosen, who happen to live across the street from the house where I grew up in Houston. Joyce and Richard, who have an affected son, told me about familial dysautonomia, a genetic disease I had never heard of, and this disorder subsequently became the focus of an important chapter in this book. Archivists are always a crucial resource, and I am grateful to Daniel Barbiero and Janice Goldblum at...