The project is part of a 1+3 year MRC funded PhD at the University of Bristol. The first year has been dedicated to scoping the ethical issues pertinent to data linkage research and conducting a conceptual analysis of these. I plan to investigate the ethical aspects of data linkage research in relation to public health and research ethics, therefore examining the possible benefits and burdens of conducting this type of research and how these are balanced and distributed in both research procedure and outcomes.

Empirical ethics: integrating qualitative, in-depth interviews and grounded theory analysis with ethical analysis will be utilised to examine the Project to Enhance ALSPAC through Record Linkage (PEARL) as a case study.

Three groups of participants will be interviewed:

1. ALSPAC researchers who have utilised or are planning to utilise data linkage in their work

2. Members of the ALSPAC ethics and law Committee (ALEC)

3. Members of the eligible ALSPAC cohort including individuals from groups potentially less likely to consent to data linkage.

Participants will be purposively sampled and members of the eligible ALSPAC cohort will be recruited in consultation with the ALSPAC family liaison team. Approximately 10-15 individuals from each of the three participant groups will be interviewed.

Members of the eligible cohort will be sampled in two ways:

1. According to their previous participation in ALSPAC

2. Specific refusers to data linkage in the PEARL study

Within these two criteria variation according to sex, level of education and ethnicity will be aimed for with attention to individuals from social groups potentially less likely to consent to data linkage (such as individuals with low or high educational levels or from ethnic minorities).

The outcomes of this research will inform recommendations regarding the ethics of conducting data linkage research.

PhD Student: Mari-Rose Kennedy

Project Supervisors: Prof. John Macleod

Dr Ainsley Newson (currently on maternity leave)

Prof. Ruud ter Meulen (temporary supervisor)

Dr Catherine Heeney

Dr Amanda Owen-Smith

Please Note: This project will be collecting new qualitative interview data. Collection of new data from direct assessment was ticked in section 4 of this form as it seemed the most accurate description available in the form for what is intended in this study.