Children, Ethics, and Modern Medicine

Acknowledgments

ACKNOWLEDGMENTS The remotest origin of this book dates to my childhood in the early 1960s, when I was admitted to a hospital in Hawaii to undergo a traumatic diagnosis for a possible heart tumor. No less now than at the age of nine, I believe that adults’ care of children involves special virtues and duties, many of which were lacking in my experience as a pediatric patient and research subject. More recently, this book finds its beginnings in the early 1990s, when Jim Wind (then of the Lilly Endowment) approached my colleague, David H. Smith, and me about the possibility of developing an alternative research model for professional ethics, one that draws from lay experience in professional contexts. The main goal was to see what normative implications we could draw after studying professionals and the persons they are supposed to serve, integrating various features of cultural anthropology and ethnography into ethical inquiry. With the support of the Lilly Endowment and the Poynter Center at Indiana University, Smith and I embarked on a pilot project in 1991–92 that assembled an interdisciplinary seminar of Indiana University faculty to read and discuss various approaches to professional ethics, focusing on the merits and limits of ethnography as a research tool. That project was followed up by a three-year national seminar, “Religion, Morality, and Professional Life,” for which Smith and I brought together scholars from around the country to theorize and carry out ethnographic approaches to ethical issues in education, journalism, the ministry, law, and medicine. Throughout these seminars, my thoughts focused on children and medicine, working on the intuition that pediatrics was a field relatively unexplored in biomedical ethics. In 1997–98, I continued this line of work as a fellow in the Program in Ethics and the Professions at Harvard University , an incomparable intellectual experience under the direction of Dennis Thompson. Guided by weekly seminars and by conversations with philosophers , political theorists, medical anthropologists, and health care providers in the Boston area, I drafted the main contours of this work and carried out a significant amount of the field research that informs it. A subsequent grant from the Lilly Endowment under the rubric of “Religion, Ethnography, and Professional Life” provided release time to continue research and writing in 1998–99, enabling me to bring this project closer to completion. Numerous critics have read drafts of this book, or parts therein, and have provided helpful (and sometimes extensive) commentary. Listing their names here does little justice by way of thanking them, and over time, I hope to express my gratitude more directly. For reading all or parts of this manuscript, thanks go to Byron Bangert, Alexandra Berkowitz, Barry Bull, Jeff Burns, Deborah Chung, David Cockerham, Peter de Marneffe, Mark Graham, Gwakhee Han, Laura Hartman, Lisa Lehmann, Sebastiano Maffettonne , Terence Martin, Jr., David McCarty, Heather McConnell, Christine Mitchell, Ann Mongoven, Douglas Ottati, Julie Pedroni, Richard Pildes, John Reeder, Walter Robinson, Ken Ryan, William Schweiker, Lisa Sideris, David H. Smith, Dennis Thompson, Robert Truog, Charles Wilson , and Mark Wilson. Heather McConnell and Kathryn Bryan provided invaluable research assistance. Judith Granbois and Karen Hellekson carefully pored over my prose, finding countless places for improvement. Paul Lauritzen and Jennifer Girod not only read an earlier manuscript but passed along lengthy suggestions for revision. David Smith patiently watched as this book become longer and more focused; I cannot thank him enough for his sage and supportive counsel. Kellie Hindman attended to numerous last-minute details. Marilyn Grobschmidt of Indiana University Press provided encouragement and editorial guidance. My colleagues in the Department of Religious Studies, always a source of intellectual stimulation and goodwill, assumed added responsibilities while I was on research leave in 1997–99. Craig Dykstra of the Lilly Endowment provided grant support that released me from department duties for the second of those two years. To all of these individuals, I am extremely grateful. Books benefit from formal as well as informal dialogue, and for the latter I am indebted to many friends and colleagues. For many conversations —spirited and leisurely—I thank Maria Antonaccio, Ginny and Nigel Biggar, Jeff Wolin, Betsy Stirratt, Oscar Kenshur, Margot Gray, Ash and Kim Nichols, and Chuck Garrettson. Several parts of this book grew out of fieldwork in different medical settings, and to those who enabled me to observe their practices, clinics, or hospitals I cannot express thanks enough. This work would not have been possible were it not for several special individuals who took it upon themselves to open...