Main description:

An examination of the early work of the innovative Avon Longitudinal Study of Parents and Children Ethics and Law Committee. It will help anyone involved in other cohort studies to understand how ethical policies evolve.

Contents:

Introduction

Part I: ALSPAC Ethics and Law Committee: a new concept

Chapter 1. Preliminaries and pioneers: framing the questions

Chapter 2. Informal or casual: an unusual style

Chapter 3. Advisory to independent: a missed opportunity?

Chapter 4. Casual contact to bureaucratic battles: liaison with the LRECs

Part II: Policy development: a case of case law

Chapter 5. Confidentiality and anonymity: a rod for their own backs

Chapter 6. Informed consent: too much information?

Chapter 7. Child protection: an observational study?

Chapter 8. Disclosure of individual results: foreseen feedback and incidental findings

Chapter 9. Disclosure of individual results: participants' requests

Chapter 10 . Participants' problems: people not policies

Chapter 11. External databases: anonymous linkage?

Part III: Beyond policy: a broad remit

Chapter 12. Retention of Cohort: incentives or inducements?

Chapter 13. Overarching oversight: undocumented and unacknowledged?

Chapter 14. Commercial collaborations: selling our souls?

Chapter 15. Influence beyond ALSPAC: extension of expertise

Conclusions