DR. GOLEM HARRY COLLINS & TREVOR PINCH DR.GOLEM HOW TO THINK ABOUT MEDICINE THE UNIVERSITY OF CHICAGO PRESS • CHICAGO AND LONDON HARRY COLLINSis distinguished The University of Chicago Press, Chicago 60637 research professor of sociology at The University of Chicago Press, Ltd., London Cardi¤ University, where he also directs © 2005 by The University of Chicago the Center for the Study of Knowledge, All rights reserved. Published 2005 Expertise, and Science. Printed in the United States of America TREVOR PINCHis professor and chair 14 13 12 11 10 09 08 07 06 05 1 2 3 4 5 of the Department of Science and ISBN: 0-226-11366-3 (cloth) Technology Studies and professor of sociology at Cornell University. Library of Congress Cataloging-in-Publication Data Collins, H. M. (Harry M.), 1943– Dr. Golem : how to think about medicine / Harry Collins and Trevor Pinch. p. ; cm. Includes bibliographical references and index. ISBN 0-226-11366-3 (cloth : alk paper) 1.Medicine, Popular. 2.Medicine—Philosophy. [DNLM:1Sociology, Medical. 2.Consumer Par- ticipation. 3.Delivery of Health Care. 4.Physician- Patient Relations.] I.Pinch, T. J. (Trevor J.) II.Title. RC81.C6952005 616(cid:2).001—dc22 2005001621 øThe paper used in this publication meets the mini- mum requirements of the American National Stan- dard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI Z39.48–1992. Contents PREFACE AND ACKNOWLEDGMENTS vii INTRODUCTION Medicine as Science and Medicine as Succor 1 1 The Hole in the Heart of Medicine: The Placebo E¤ect 18 2 Faking It for Real: Bogus Doctors 35 3 Tonsils: Diagnosing and Dealing with Uncertainty 61 CONTENTS vi 4 Alternative Medicine: The Cases of Vitamin C and Cancer 84 5 Yuppie Flu, Fibromyalgia, and Other Contested Diseases 112 6 Defying Death: Cardiopulmonary Resuscitation (CPR) 132 7 The AIDS Activists 153 8 Vaccination and Parents’ Rights: Measles, Mumps, Rubella (MMR), and Pertussis 180 CONCLUSION The Themes Revisited 205 NOTES 225 BIBLIOGRAPHY 235 INDEX 241 Preface and Acknowledgments In the two earlier volumes of the Golemseries we set out our claim that the products of science and technology are better thought of as “industrial diamonds” rather than brightly polished jewels— science, as we explained, is often untidy and messy. Science is a golem. As we said in the first volume in this series: A golem is a creature of Jewish mythology. It is a humanoid made by man from clay and water, with incantations and spells. It is powerful. It grows a little more powerful every day. It will follow orders, do your work, and protect you from the ever-threatening enemy. But it is clumsy and dangerous. Without control a golem may destroy its masters with its flailing vigor; it is a lumbering fool who knows nei- ther his own strength nor the extent of his clumsiness and igno- rance. A golem, in the way we intend it, is not an evil creature but it is a little daft. Golem science is not to be blamed for its mistakes; they are our mistakes. A golem cannot be blamed if it is doing its best. But we must not expect too much. A golem, powerful though it is, is the creature of our art and of our craft. To clear up a frequent misreading, it is not the danger of the golem to which we refer but its well-meaning clumsiness. vii PREFACE AND ACKNOWLEDGMENTS viii This claim about the clumsiness of science comes as less of a novelty in the case of medicine than in the case of physics and the like because death and illness are always with us, so we know that medicine is fallible.1 The really hard question that remains is, “Knowing medicine is fallible, what should we do?” In the cases of science and technology looked at in our earlier volumes, we sug- gested that the biggest change needed was in perception. If the public knew how science and technology really worked, they would be better at making choices that turned on these issues, and this would eventually a¤ect their lives, mediated, for example, by the way they acted at the ballot box. The di¤erence in the case of medicine is that, as individuals, we do not have the luxury of wait- ing for “eventually.” To put this another way, the authors of the two earlier books in this series had two kinds of relationships with their material. In the bulk of the case studies, we redescribed episodes of science and technology where others had done the primary research; in some of the cases, however, we did the primary research ourselves. In this book we find we have a still greater intimacy with the mate- rial. In several of the chapters we find ourselves mentioning our own involvement in medical dramas, major or minor. We find ourselves discussing our own decisions about what to do in a way we never had to in the earlier two volumes. Indeed, the disagree- ment between the authors in the matter of vaccination, indicated in the last substantive chapter of the book, twice came within a whisker of ending the entire project, until we found a way of ex- pressing two di¤erent views about medical choice within the one analytical frame. Dr. Golemhas, then, been a much harder book to write than The Golemor The Golem at Large;the two earlier books were less involving—less direct. Here we have to decide what to do as well as what to think.And we could have used many more ex- amples from our own experiences: the doctor whose view of treat- ment was so completely “scientized” that he treated diagnosis as a “fault tree,” and never examined the patient himself (one of the authors) but sent him for an x-ray and looked at nothing but the technical report. That bad doctor put one of us through an agoniz- ing summer before a pharmacist explained how to handle the ex- cruciating symptoms of the not very serious underlying damage. We could have described the complete failure of orthodox medi- cine to cure a chronic bad back, misdiagnosed and wrongly treated with drugs, the resolution of which was begun with a simple ma- nipulation by a chiropractor. We could have described the unrea- sonable pressure put on one of us to have a serious operation when mild medication proved suªcient to alleviate the symptoms if not the cause. Generalizing from this kind of personal experience is danger- ous, however. Because orthodox medicine represents the “oªcial” view, it is its occasional failures that make the headlines, not its steady successes. For each of these cases of failure, there are many more where the pharmacist’s advice or the alternative medical treatment would fail, whereas medical sciencewould get it right. For each case of overenthusiasmfor a radical intervention, there are one or more cases where any kind of intervention was wisely advised against—including one which would have put money in the pockets of a private consultant. Indeed, both authors and their families have benefited many more times, and just as strikingly, from their regular doctors’calm prognoses, sound recommenda- tions, and even from the occasional display of brilliant diagnostic virtuosity.2Knowing, as all of us must, that even if we are lucky enough to have had few such experiences in our lives, the time will come when the failing body will start to ask serious questions, we have tried to find a way through the tangle of an imperfect medi- cine that can often work dramatically well. Just pointing to the problems would not be good enough. We have felt obliged, if not to find a solution, at least to provide materials and arguments that help us think better about issues.3 ix PREFACE AND ACKNOWLEDGMENTS