History of tHe Avon LongitudinAL study of PArents And CHiLdren (ALsPAC), c.1980–2000 The transcript of a Witness Seminar held by the History of Modern Biomedicine Research Group, Queen Mary, University of London, on 24 May 2011 edited by C overy, L A reynolds and e M tansey volume 44 2012 ©the trustee of the Wellcome trust, London, 2012 first published by Queen Mary, university of London, 2012 the History of Modern Biomedicine research group is funded by the Wellcome trust, which is a registered charity, no. 210183. isBn 9780 90223 878 7 All volumes are freely available online at www.history.qmul.ac.uk/research/modbiomed/ wellcome_witnesses/ Please cite as: overy C, reynolds L A, tansey e M. (eds) (2012) History of the Avon Longitudinal Study of Parents and Children (ALSPAC), c.1980–2000. Wellcome Witnesses to twentieth Century Medicine, vol. 44. London: Queen Mary, university of London. C ontents illustrations and credits v Abbreviations vii Witness seminars: Meetings and publications; Acknowledgements E M Tansey, L A Reynolds and C Overy ix introduction David Gordon xxi transcript Edited by C Overy, L A Reynolds and E M Tansey 1 Appendix 1 Table of Cohort Studies 81 Appendix 2 A summary timeline of the origins and development of the Avon Longitudinal Study of Parents and Children (ALSPAC) for the Witness Seminar, 24 May 2011 83 Appendix 3 Funding contributions towards the Children in Focus Study 85 Appendix 4 Table of approximate numbers of grants submitted between 1989 and December 2005 87 Appendix 5 Extract from the Human Fertilisation and Embryology Bill, House of Lords, 1990 89 Appendix 6 Letter of instructions for the ALSPAC Air Study 91 Appendix 7 The Teenage Advisory Panel 93 references 95 Biographical notes 103 index 113 iL L ustrAtions And Credits figure 1 Letter sent to ALSPAC parents in 1990–1992 during pregnancy and accompanying their first questionnaire. Supplied by and reproduced by permission of Mrs Ruth Bowles and Professor Jean Golding. 26 figure 2 Card in Hindi introducing ALSPAC. Supplied by Mrs Yasmin Iles-Caven and reproduced by permission of Professor Jean Golding. 28 figure 3 Expecting A Baby? Poster written in seven languages. Supplied by Mrs Yasmin Iles-Caven and reproduced by permission of Professor Jean Golding. 29 figure 4 ALSPAC Newsletter, Autumn 1990. Supplied by Mrs Yasmin Iles-Caven and reproduced by permission of Professor Jean Golding. 30 figure 5 Total body bone density scan given to a participant at the Focus Group 9+. Supplied by Mrs Ruth Bowles and reproduced by permission of Mrs Bowles and Professor Jean Golding. 41 figure 6 Kaija Turvey, the ALSPAC Tooth Fairy, ALSPAC Newsletter 26 (2003). Reproduced by permission of the Bristol Evening Post. 48 figure 7 Information on blood sampling from the Focus@7 leaflet (1998). Supplied by Mrs Ruth Bowles and reproduced by permission of Professor Jean Golding. 53 v figure 8 Taking blood at the 2½ year clinic, Newsletter for Children in Focus at 2½ years (1995). Supplied by Mrs Yasmin Iles-Caven and Professor Marcus Pembrey and reproduced by permission of Professor Jean Golding. 54 figure 9 Chart given to midwives for the collection of samples in pregnancy and at birth. Supplied by Mrs Yasmin Iles-Caven and reproduced by permission of Professor Jean Golding. 56 figure 10 Robobanker robot. Supplied by Mrs Yasmin Iles-Caven and reproduced by permission of Professor Jean Golding. 62 table 1 Outline programme for ‘History of the Avon Longitudinal Study of Parents and Children’ Witness Seminar. 4 vi AB B reviAtions ABRC Advisory Board for the Research Councils ALSPAC Avon Longitudinal Study of Pregnancy and Childhood / Parents and Children ARC Asthma Research Council BBSRC Biotechnology and Biological Sciences Research Council BCS70 1970 British Cohort Study BIS Business Innovation and Skills BPA British Paediatric Association DoH Department of Health EBV Epstein-Barr Virus EDTA Ethylenediaminetetraacetic acid ELSPAC European Longitudinal Study of Pregnancy and Childhood EMLA Eutectic Mixture of Local Anesthetics ESDS Economic and Social Data Service ESRC Economic and Social Research Council GWAS Genome-wide association study HPA Health Protection Agency LREC Local research ethics committee MCS Millennium Cohort Study MRC Medical Research Council NCDS National Child Development Study NCT National Childbirth Trust NFIP National Foundation for Infantile Paralysis NIH National Institutes of Health vii NRES National Research Ethics Service NSHD National Survey of Health & Development PCR Polymerase chain reaction PHLS Public Health Laboratory Service TAP Teenage Advisory Panel UBHT United Bristol Healthcare Trust WHO World Health Organization viii W e itness s MinArs: MEETINGS AND PUBLICATIONS 1 In 1990 the Wellcome Trust created a History of Twentieth Century Medicine Group, associated with the Academic Unit of the Wellcome Institute for the History of Medicine, to bring together clinicians, scientists, historians and others interested in contemporary medical history. Among a number of other initiatives the format of Witness Seminars, used by the Institute of Contemporary British History to address issues of recent political history, was adopted, to promote interaction between these different groups, to emphasize the potential benefits of working jointly, and to encourage the creation and deposit of archival sources for present and future use. In June 1999 the Governors of the Wellcome Trust decided that it would be appropriate for the Academic Unit to enjoy a more formal academic affiliation and turned the Unit into the Wellcome Trust Centre for the History of Medicine at UCL from 1 October 2000 to 30 September 2010. The History of Twentieth Century Medicine Group 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 continues to fund. The Witness Seminar is a particularly specialized form of oral history, where several people associated with a particular set of circumstances or events are invited to come together to discuss, debate, and agree or disagree about their memories. To date, the History of Twentieth Century Medicine Group has held more than 50 meetings, most of which have been published, as listed on pages pages xiii–xvii. Subjects are usually proposed by, or through, members of the Programme Committee of the Group, which includes professional historians of medicine, practising scientists and clinicians, and once an appropriate topic has been agreed, suitable participants are identified and invited. This inevitably leads to further contacts, and more suggestions of people to invite. As the organization of the meeting progresses, a flexible outline plan for the meeting is devised, usually with assistance from the meeting’s chairman, and some participants are invited to ‘set the ball rolling’ on particular themes, by speaking for a short period to initiate and stimulate further discussion. 1 The following text also appears in the ‘Introduction’ to recent volumes of Wellcome Witnesses to Twentieth Century Medicine as listed on pages xiii–xvii. ix Each meeting is fully recorded, the tapes are transcribed and the unedited transcript is immediately sent to every participant. Each is asked to check his or her own contributions and to provide brief biographical details. The editors turn the transcript into readable text, and participants’ minor corrections and comments are incorporated into that text, while biographical and bibliographical details are added as footnotes, as are more substantial comments and additional material provided by participants. The final scripts are then sent to every contributor, accompanied by forms assigning copyright to the Wellcome Trust. Copies of all additional correspondence received during the editorial process are deposited with the records of each meeting in archives and manuscripts, Wellcome Library, London. As with all our meetings, we hope that even if the precise details of some of the technical sections are not clear to the non-specialist, the sense and significance of the events will be understandable. Our aim is for the volumes that emerge from these meetings to inform those with a general interest in the history of modern medicine and medical science; to provide historians with new insights, fresh material for study, and further themes for research; and to emphasize to the participants that events of the recent past, of their own working lives, are of proper and necessary concern to historians. x A L CknoW edgeMents Professor Jean Golding and Professor Marcus Pembrey suggested ‘The History of the Avon Longitudinal Study of Parents and Children’ as a suitable topic for a Witness Seminar and helped us to plan the meeting, for which we are grateful. We also thank Professor Catherine Peckham for her excellent chairing of the occasion, Professor David Gordon for writing the introduction to these published proceedings, and Dr Alan Doyle who, unable to attend the meeting, read and commented on a draft transcript. We are grateful to Mrs Yasmin Iles-Caven, Mrs Ruth Bowles and Professor Marcus Pembrey for providing illustrations. For permission to reproduce images included here we thank Professor Jean Golding, Mrs Bowles and the Bristol Evening Post; material is also reproduced under the Open Parliament Licence. To ensure the smooth running of all our meetings, we depend a great deal on Wellcome Trust staff: the Audiovisual Department, Catering, Reception, Security and Wellcome Images. We thank Mr Akio Morishima who supervised the design and production of this volume, our indexer Ms Liza Furnival, and our readers Ms Fiona Plowman and Mrs Sarah Beanland. Our thanks also go to Mrs Deborah Gee who transcribed the seminar. Finally we thank the Wellcome Trust for supporting this programme. Tilli Tansey Lois Reynolds Caroline Overy School of History, Queen Mary, University of London xi VOsn LuMe i tHis series 1. Technology transfer in Britain: The case of monoclonal antibodies Self and non-self: A history of autoimmunity Endogenous opiates The Committee on Safety of Drugs (1997) ISBN 1 86983 579 4 2.