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

2012·1.1 MB·English

by  Reynolds, L. A

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.
Contents
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
iLLustrAtions 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
ABBreviAtions
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
Witness seMinArs:
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.
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