HUMAN GENE MAPPING WORKSHOPS c.1973–c.1991 The transcript of a Witness Seminar held by the History of Modern Biomedicine Research Group, Queen Mary University of London, on 25 March 2014 Edited by E M Jones and E M Tansey Volume 54 2015 ©The Trustee of the Wellcome Trust, London, 2015 First published by Queen Mary University of London, 2015 The History of Modern Biomedicine Research Group is funded by the Wellcome Trust, which is a registered charity, no. 210183. ISBN 978 1 91019 5031 All volumes are freely available online at www.histmodbiomed.org Please cite as: Jones E M, Tansey E M. (eds) (2015) Human Gene Mapping Workshops c.1973–c.1991. Wellcome Witnesses to Contemporary Medicine, vol. 54. London: Queen Mary University of London. CONTENTS What is a Witness Seminar? v Acknowledgements E M Tansey and E M Jones vii Illustrations and credits ix Abbreviations and ancillary guides xi Introduction Professor Peter Goodfellow xiii Transcript Edited by E M Jones and E M Tansey 1 Appendix 1 Photographs of participants at HGM1, Yale; ‘New Haven Conference 1973: First International Workshop on Human Gene Mapping’ 90 Appendix 2 Photograph of (EMBO) workshop on ‘Cell Hybridization and Somatic Cell Genetics’, 1973 96 Biographical notes 99 References 109 Index 129 Witness Seminars: Meetings and publications 141 WHAT IS A WITNESS SEMINAR? The Witness Seminar is a specialized form of oral history, where several individuals associated with a particular set of circumstances or events are invited to meet together to discuss, debate, and agree or disagree about their memories. The meeting is recorded, transcribed, and edited for publication. This format was first devised and used by the Wellcome Trust’s History of Twentieth Century Medicine Group in 1993 to address issues associated with the discovery of monoclonal antibodies. We developed this approach after holding a conventional seminar, given by a medical historian, on the discovery of interferon. Many members of the invited audience were scientists or others involved in that work, and the detailed and revealing discussion session afterwards alerted us to the importance of recording ‘communal’ eyewitness testimonies. We learned that the Institute for Contemporary British History held meetings to examine modern political, diplomatic, and economic history, which they called Witness Seminars, and this seemed a suitable title for us to use also. The unexpected success of our first Witness Seminar, as assessed by the willingness of the participants to attend, speak frankly, agree and disagree, and also by many requests for its transcript, encouraged us to develop the Witness Seminar model into a full programme, and since then more than 50 meetings have been held and published on a wide array of biomedical topics.1 These seminars have proved an ideal way to bring together clinicians, scientists, and others interested in contemporary medical history to share their memories. We are not seeking a consensus, but are providing the opportunity to hear an array of voices, many little known, of individuals who were ‘there at the time’ and thus able to question, ratify, or disagree with others’ accounts – a form of open peer-review. The material records of the meeting also create archival sources for present and future use. The History of Twentieth Century Medicine Group became a part of the Wellcome Trust’s Centre for the History of Medicine at UCL in October 2000 and remained so until September 2010. It has been part of the School of History, Queen Mary, University of London, since October 2010, as the History of Modern Biomedicine Research Group, which the Wellcome Trust 1 See pages 141–6 for a full list of Witness Seminars held, details of the published volumes, and other related publications. v funds principally under a Strategic Award entitled ‘The Makers of Modern Biomedicine’. The Witness Seminar format continues to be a major part of that programme, although now the subjects are largely focused on areas of strategic importance to the Wellcome Trust, including the neurosciences, clinical genetics, and medical technology.2 Once an appropriate topic has been agreed, usually after discussion with a specialist adviser, suitable participants are identified and invited. As the organization of the Seminar progresses and the participants’ list is compiled, a flexible outline plan for the meeting is devised, with assistance from the meeting’s designated chairman/moderator. Each participant is sent an attendance list and a copy of this programme before the meeting. Seminars last for about four hours; occasionally full-day meetings have been held. After each meeting the raw transcript is sent to every participant, each of whom is asked to check his or her own contribution and to provide brief biographical details for an appendix. The editors incorporate participants’ minor corrections and turn the transcript into readable text, with footnotes, appendices, a glossary, and a bibliography. Extensive research and liaison with the participants is conducted to produce the final script, which is then sent to every contributor for approval and to assign copyright to the Wellcome Trust. Copies of the original, and edited, transcripts and additional correspondence generated by the editorial process are all deposited with the records of each meeting in the Wellcome Library, London (archival reference GC/253) and are available for study. For all our volumes, we hope that, even if the precise details of the more technical sections are not clear to the non-specialist, the sense and significance of the events will be understandable to all readers. Our aim is that the volumes inform those with a general interest in the history of modern medicine and medical science; provide historians with new insights, fresh material for study, and further themes for research; and emphasize to the participants that their own working lives are of proper and necessary concern to historians. 2 See our Group’s website at www.histmodbiomed.org vi ACKNOWLEDGEMENTS Many thanks to Professor Peter Harper for suggesting this meeting, and to Professor Sue Povey and Professor Ian Craig who also advised us in planning the seminar. Additionally, Sue Povey generously lent us her precious copies of many of the HGM volumes. Professor Sir Walter Bodmer kindly provided a photograph of the participants at the EMBO 1973 conference that he convened in Oxford, and we are very grateful to him and Professor Veronica van Heyningen for identifying many of its participants; and to other Witness Seminar participants who have engaged enthusiastically and helpfully in the editorial process. As with all our meetings, we depend a great deal on Wellcome Trust staff to ensure their smooth running: the Audiovisual Department, Catering, Reception, Security, and Wellcome Images. We are also grateful to Mr Akio Morishima for the design and production of this volume; the indexer Ms Liza Furnival; Mrs Sarah Beanland and Ms Fiona Plowman for proofreading; Mrs Debra Gee for transcribing the seminar; Ms Caroline Overy for assisting with running the seminar and Mr Adam Wilkinson who assisted in the organization and running of the meeting. Finally, we thank the Wellcome Trust for supporting the Witness Seminar programme. Tilli Tansey Emma Jones School of History, Queen Mary University of London vii ILLUSTRATIONS AND CREDITS* Figure A Professor Peter Goodfellow; provided with permission xv Figure 1 Witness Seminar participants 2 Figure 2 Professors Veronica van Heyningen, Bert Bakker and Tilli Tansey 3 Figure 3 Professor Peter Harper 4 Figure 4 Professor Sue Povey 8 Figure 5 Professor Sir Walter Bodmer 11 Figure 6 Professor Ellen Solomon, Professor Malcolm Ferguson-Smith 15 Figure 7 Professor Ian Craig, Professor Malcolm Ferguson-Smith 16 Figure 8 Professor Veronica van Heyningen 20 Figure 9 Professors Veronica van Heyningen and Sue Povey with 1973 EMBO conference photograph: see Appendix 2 for original with key 22 Figure 10 Professor Bert Bakker 30 Figure 11 Professor Ellen Solomon 31 Figure 12 Professor Maj Hultén 35 Figure 13 Professor Sue Malcolm 43 Figure 14 Professor Tim Bishop 47 Figure 15 Professor Chris Rawlings 58 Figure 16 Professor Michael Morgan 63 * Unless otherwise stated, all photographs were taken by Thomas Farnetti, Wellcome Trust, and reproduced courtesy of the Wellcome Library, London. ix Figure 17 Dr Susan Wallace 86 Table 1 List of HGMW with dates of meetings, convenors, and editors of publications 6 Table 2 Outline programme for Witness Seminar 7 Photographs of participants at HGM1, Yale; Appendix 1 ‘New Haven Conference 1973: First International Workshop on Human Gene Mapping’, reproduced from Ruddle et al. (eds) (1974a); pages 206– 11. The editors of the present volume have made every effort to obtain permission for all copyright-protected material. Any omissions are entirely unintentional. 90, 92, 94 Appendix 2 Photograph of participants in the European Molecular Biology Organisation (EMBO) workshop on ‘Cell Hybridisation and Somatic Cell Genetics’, Oxford, 12–14 July 1973; provided by Professor Sir Walter Bodmer with permission. 97 ABBREVIATIONS AND ANCILLARY GUIDES CEPH Centre d’Étude du Polymorphisme Humain cDNA Complementary DNA EMBO European Molecular Biology Organization EU European Union GDB Genome Database HAT Histone acetyltransferase HGM/W Human Gene Mapping/Workshops HLA Human leukocyte antigen* HUGO Human Genome Organization ICRF Imperial Cancer Research Fund LOD Log of the odds on linkage MRC Medical Research Council NIH National Institutes of Health RFLP Restriction fragment length polymorphisms UCL University College London OMIM (Online Mendelian Inheritance in Man) is a reliable information source for human genes and phenotypes: http://www.ncbi.nlm.nih.gov/omim HUGO Gene Nomenclature Committee has a search facility for internationally- approved gene nomenclature; http://www.genenames.org/ (Websites visited 21 April 2015). * See note 68 in main transcript about HLA nomenclature. xi INTRODUCTION Scientific events that become part of everyday culture are rare but I can quote two from my lifetime: the determination of the structure of DNA and sequencing the human genome.