ABSTRACT

This chapter describes how Avon Longitudinal Study of Parents and Children (ALSPAC) has maintained the process of ethical review without compromising any of the many people involved whilst trying to minimise duplication of the considerable workload. The governance of ALSPAC has changed over time both within the University of Bristol and because of changes introduced when substantial funding was provided by the Medical Research Council and the Wellcome Trust. This later development led to the setting up of a Steering Committee including external members and an external Chair. The committee continually reviews issues of confidentiality and anonymity. With approval by the committee, ALSPAC maintains a strict ethical 'divide' between those staff who have access to names, addresses or other identifying data and those who are able to link and analyse the many different data sets. Related to confidentiality and anonymity is data protection and who may have access to ALSPAC data.