The Practices of Human Genetics PDF
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THE PRACTICES OF HUMAN GENETICS Sociology of the Sciences A YEARBOOK - VOLUME XXI - 1997 Managing Editor: Peter Weingart, Universitiit Bielefeld, Germany Editorial Board: Yaron Ezrahi, The Israel Democracy Institute, Jerusalem, Israel Sheila Jasanoff, Harvard University, Cambridge, MA, USA Bernw~d Joerges, Wissenschaftszentrum Berlin, Germany Everett Mendelsohn, Harvard University, Cambridge, MA, USA Yoichiro P. Murakami, University of Tokyo, Japan Helga Nowotny, S1WETH-Zentrum, Zurich, Switzerland Hans-Joerg Rheinberger, Max-Planck Institut for Wissenschaftsgeschichte, Berlin, Germany Terry Shinn, GEMAS Maison des Sciences de I' Homme, Paris, France Richard D. Whitley, Manchester Business School, University ofM anchester, United Kingdom Bjoern Wittrock, SCASSS, Uppsala, Sweden The titles published in this series are listed at the end oft his volume. THE PRACTICES OF HUMAN GENETICS Edited by MICHAEL FORTUN Hampshire College, Amherst, Massachusetts, USA and EVERETI MENDELSOHN Harvard University, Cambridge, Massachusetts, USA SPRINGER-SCIENCE+BUSINESS MEDIA, B.V. A c.I.P. Catalogue record for this book is available from the Library of Congress. ISBN 978-94-010-5985-5 ISBN 978-94-011-4718-7 (eBook) DOI 10.1007/978-94-011-4718-7 Printed on acid1ree paper AII Rights Reserved. © 1999 Springer Science+Business Media Dordrecht Originally published by Kluwer Academic Publishers in 1999 Softcover reprint of the hardcover 1s t edition 1999 No part of the material protected by this copyright notice may be reproduced or utlized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright owner. TABLE OF CONTENTS Preface vii Introduction IX GARLAND E. ALLEN / Modem Biological Determinism: The Violence Initiative, The Human Genome Project, and the New Eugenics 1 MICHAEL FORTUN / Projecting Speed Genomics 25 JOAN H. FUJIMURA / The Practices of Producing Meaning in Bioinformatics 49 JEAN-PAUL GAUDILLIERE / Circulating Mice and Viruses: The Jackson Memorial Laboratory, the National Cancer Institute, and the Genetics of Breast Cancer, 1930-1965 89 PETER KEATING, CAMILLE LIMOGES, ALBERTO CAMBRlOSO / The Automated Laboratory: The Generation and Replication of Work in Molecular Genetics 125 UTE DEICHMANN / Hans Nachtsheim, A Human Geneticist under National Socialism and the Question of Freedom of Science 143 DOROTHY NELKIN, M. SUSAN LINDEE / Good Genes and Bad Genes: DNA in Popular Culture 155 SIMONE BATEMAN NOVAES / Making Decisions about Someone Else's Offspring: Geneticists and Reproductive Technology 169 DIANE B. PAUL / PKU Screening: Competing Agendas, Converging Stories 185 DORIS T. ZALLEN / From Butterflies to Blood: Human Genetics in the United Kingdom 197 v PREFACE That concern about human genetics is at the top of many lists of issues requiring intense discussion from scientific, political, social, and ethical points of view is today no surprise. It was in the spirit of attempting to establish the basis for intelligent discussion of the issues involved that a group of us gathered at a meeting of the International Society for the History, Philosophy, and Social Studies of Biology in the Summer of 1995 at Brandeis University and began an exploration of these questions in earlier versions of the papers presented here. Our aim was to cross disciplines and jump national boundaries, to be catholic in the methods and approaches taken, and to bring before readers interested in the emerging issues of human genetics well-reasoned, informative, and provocative papers. The initial conference and elements of the editorial work which have followed were generously supported by the Stifterverband fUr die Deutsche Wissenschaft. We thank Professor Peter Weingart of Bielefeld University for his assistance in gaining this support. As Editors, we thank the anonymous readers who commented upon and critiqued many of the papers and in tum made each paper a more valuable contribution. We also thank the authors for their understanding and patience. Michael Fortnn Everett Mendelsohn Cambridge, MA September 1998 vii INTRODUCTION In 1986, the annual symposium at the venerable Cold Spring Harbor laboratories was devoted to the "Molecular Biology of Homo sapiens." This 51st gathering marked not only the beginning of a new half-century of such events but, as James Watson noted in the prefatory remarks to the printed proceedings, the opening of "a new era of enlightenment." Only once in the first fifty years had humans been the subject of a symposium (in 1964), but Watson was certain that this was a topic to be "returned to over and over during the second 50 symposium years."1 As to new terrain scientists turn so too do the analysis of science. Now that human molecular genetics has become so active and potential appli cations so widespread it has come to occupy a focal position in a complex of social issues. Sociologists, historians, anthropologists, philosophers, ethicists, legal scholars, and many others will be scrambling for years to come to keep up with these developments and their implications, and to create new tools for their analysis. The essays in this volume represent an attempt to come to terms with a field marked as much by rapid changes in sophisticated techno scientific knowledge, instruments and technique, as by profound upheavals in the ways we think about "the ethical," "the biological," "the normal," and indeed, "the human" itself. "What are we?" and "what may we become?" are questions undergoing the most intense negotiations - negotiations taking place in the varied and quite heterogeneous spaces of laboratories, government hearing rooms, corporate board rooms, law courts, clinics, homes, cyberspace, and we hope in the pages of books such as this one. Over the last decade and a half, the analysis oftechnoscientific practices have been assuming a more prominent role among communities of scholars which take science and technology as their subjects - not displacing such traditional categories as epistemology or ethics, but as a new channel for thinking about those categories. In naming this volume "The Practices of Human Genetics," it was our desire to collect essays which carried out detailed, in-depth studies of the complicated, laborious ways - in both current and historical situations - in which new knowledge, new Ijames D. Watson, "Foreword," Molecular Biology of Homo sapiens: Cold Spring Harbor Symposia in Quantitative Biology 51 (1986), p. xv. ix Michael Fortun and Everett Mendelsohn (eds.), The Practices of Human Genetics, ix-xiv ©1999 Kluwer Academic Publishers. x Introduction technical practices and new social arrangements have been achieved. Human genetics is perhaps particularly messy and ambiguous, and certainly highly charged in the fields often referred to simply as "ethical, legal, and social implications." The questions raised and the responses demanded are among the most difficult, inexact, and contentious; ready made solutions and easy commitments are subject to immediate dissolu tion, or at the very least profound, difficult, and fundamental questioning. We believe that it is only through the kind of painstaking analyses of situated practices which these essays demonstrate that we will be enabled to continue to re-orient ourselves to respond to the questions of human genetics. The hybridization that we see occurring now between fields of genetics - indeed, between organisms themselves - in the "model" systems of such different organisms as mice, C. elegans, Drosophila, yeast, and humans, is not without its historical precedents. Doris Zallen delves into the intersections between an "ecological genetics" centered around Lepidoptera and early work on human blood groups in the U.K. In her narrative, E. B. Ford is at the growing center of a network which included his students, other colleagues, and institutions like the Nuffield Founda tion; it was a network which developed and spread Ford's concepts of polymorphisms and "super-genes" into work on Rh blood groups and into new research and educational institutions like the Nuffield Unit of Medical Genetics in the Liverpool University Department of Medicine. Peter Keating and Alberto Cambrosio describe the automated labora tories within which molecular genetics is increasingly carried out as a "collective of humans and non-humans, inextricably composed of scientists, machines, and technicians." By focussing on what exactly is being auto mated, they overlay the questions and concerns of actor-network theory in current sociology of science on themes like "deskilling" taken from old sociology of work. Automation in this context centers around strategies of neither mimicry nor replacement, but of substitution: an addition that results in new contexts of corporate relations and interests, new funding mechanisms, new realms of interdisciplinarity, and shifting boundaries between what counts as science and technology. Studies of the complexities of practice provide much-needed, constant reminders that human genetics is not a monolithic enterprise, and is neither intent on nor capable of subsuming the world under one point of view. Jean-Paul Gaudilliere details what he calls the "multi-layered com plex of practices" which in the 1960s build up a heterogeneous network of humans and non-humans, (in this latter instance mice and their retail Introduction Xl markets). Examining the challenge presented by the "milk-influence" model to the genetic models of breast cancer Gaudilliere reveals the complexity, multi-directionality, and disagreements that exist even at the core of the most "pro-genetic" of research enterprises. The pair of papers by Garland Allen and by Dorothy Nelin and Susan Lindee directly raise the social policy contexts within which the concepts and images of human genetics have been deployed. The "Violence Initiative," the program developed by the U.S. National Institutes of Health in 1992, is the primary focus of Allen's work. The program's aim was to identify the cause behind the perceived increase in violent and anti-social behavior among Americans. The program definition relied heavily on the supposition of a genetic or biological basis for the problems. Allen, using a socio-political analytical frame briefly tells the story, locates the activity in the social context of the times and then challenges the attribution of a genetic basis for complex human behaviors. He criti cizes both the rigor of some of the science used in asserting the genetic basis and also the manner in which the press and other public media over stressed the genetic claims. This is a point that emerges very strongly in the study by Nelkin and Lindee. But Allen goes further, relying on his years of historical study of eugenics, and sees a continuity from the past of faulty method and conceptualization. Specifically he notes the poor definition of phenotypes, the tendency to reduce complex behaviors to a single entity - the gene, the uncritical use of heritability estimates, the faulty or casual use of non-human behavioral models and the simple genetic reductions, e.g. "the gene for criminality." The Nelkin-Lindee contribution picks up these points and asks a series of critical questions focusing on why there is such widespread and easy acceptance in the public literature of the idea of genetic causes for behavioral and social problems - genes for alcoholism, crime, aggression and war. They identify what they label "genetic fatalism," a person is a readout of his/her DNA. They point to the appeal to simplicity that seems behind the willingness to explain complex human issues through recourse to the genes. But they importantly note (and imply the need for further research of the sort that Allen has begun) genetic explanations as com pared to societal/environmental ones seem to shift with prevailing social agendas. Genetic explanations, while neutralizing success or failure - "its all in the blood/genes", also relieve a society of responsibility: a criminal or star is born, not made. And if this is at odds with the American ideal of the perfectibility of humans or at least their improba bility, so much worse for the ideal. The recent book by Richard xii Introduction Herrnstein and Charles Murray, The Bell Curve, they note is a prime example of this fatalistic assumption. Since basic human attributes like intelligence are genetically bound, any social reforms are likely to have limited consequences and that therefore social policy should be guided by these biological constraints. The book was particularly controversial on the American scene in that it strongly implied that there was a basic racial, genetic background to whitelblack differences in measured intelligence - IQ. Both authors argued elsewhere that such ameliorative programs for poor black and Hispanic children as Head Start were wasted since they faced a genetically caused barrier. The implications one can draw from studies of this sort are that key elements of the older eugenic program are alive and well. The Galtonian message is replayed in newer form: improving society can be achieved only by improving DNA. PKU (phenylketonuria) detection and therapy has long been accepted as a model of how to deal successfully with a deleterious genetic abnormality. Widescale screening of the newborn population identified those infants at risk for this metabolic disorder. Therapy, if started early, was seen as achieving high levels of success and confirming the medical genetic paradigm. As Diane Paul demonstrates in her paper the whole story seemed to be unproblematic and acceptable both to those who were advocates of genetic determinism and those opposed to that view. The identification of "a" gene for PKU was a boon to genetic explanation of disease, while at the same time the environmentalist opponents could argue convincingly that the expression of a gene can be drastically altered by changing the environment, i.e. the diet. Therefore they could argue convincingly that biology is not destiny. In fact, as Paul ironically points out the argument was even carried over into the debate over the hereditary basis of intelligence: treatment (amelioration) can change outcomes. In this sense the PKU story showed the flaw in genetic determinism. But Paul goes back into the PKU case itself to identify an important flaw in the story itself. First she notes that the historians and other analysts overlooked key elements in their accounts: the theory was not well understood and it was unclear how long the very restrictive diet must be followed, e.g. into adolescence? into adulthood? She further noted that the results of the therapy were marked by uncertainties as to how thorough the cure actually was; the recipients often exhibited below expected mental abilities, demonstrating some of the problems that afflicted the untreated. Secondly, however, she found almost no discussion in the medical literature (one citation in 3000 articles identified) of the financial costs of the standard dietary therapy for PKU.
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