Chapters in this book

1. Front Matter i
2. Contents iii
3. List of figures and photographs v
4. List of abbreviations vi
5. Authors and contributors, with current positions ix
6. Acknowledgements xii
7. Foreword xiv
8. Preface xvii
9. Introduction 1
10. ALSPAC Ethics and Law Committee: a new concept
11. Preliminaries and pioneers: framing the questions 9
12. Informal or casual: an unusual style 21
13. Advisory to independent: a missed opportunity 30
14. Bureaucratic battles: liaison with Local Research Ethics Committees 39
15. Policy development: a case of case law
16. Confidentiality and anonymity: a rod for their own backs 49
17. Informed consent: too much information 56
18. Child protection: an observational study? 69
19. Disclosure of individual results: foreseen feedback and incidental findings 76
20. Disclosure of individual results: participants’ requests 88
21. Participants’ problems: people not policies 95
22. External databases: anonymous linkage 105
23. Beyond policy: a broad remit
24. Retention of the Cohort: incentives or inducements 117
25. Commercial collaborations: selling our souls 126
26. Comprehensive oversight: undocumented and unacknowledged 137
27. Influence beyond ALSPAC: extension of expertise 147
28. Conclusions 156
29. Postscript 165
30. Notes 166
31. References 178
32. ALSPAC Steering Committee: founding members 181
33. ALSPAC Ethics and Law Committee members: appointed 1990–2005 182
34. Letter to participants: further information concerning confidentiality 184
35. Young Mothers paper by Elizabeth Mumford 187
36. The Children of the Nineties study (ALSPAC) and collaboration with pharmaceutical companies 192
37. Index 197