Presentation from the MI Lunch on 25 March 2014 on " Improving the Science and Challenging Participant Expectations: Data Linkage in the Avon Longitudinal Study of Parents And Children (ALSPAC) ".

About the presentation

Maintaining on-going participation and follow-up of research participants is of central importance to the scientific viability of longitudinal cohort studies. Increasingly, routinely collected administrative data, such as health or education records are used to recruit or follow-up participants, enrich studies with new types of information or fill in missing data.

This presentation reported some of the findings from a qualitative case study of a current data linkage project within the Avon Longitudinal Study of Parents and Children (ALSPAC), a prospective birth cohort study based at the University of Bristol. The emphasis of the talk was the research relationships that have developed over the course of ALSPAC, where members of the cohort reported having a special trusting relationship with the study, as well as certain understandings about the nature of ALSPAC and, assumptions regarding how data pertaining to them in the study is used and by whom.

Mari-Rose Kennedy (University of Bristol) explained how issues, such as data linkage, exemplify the dynamic nature of longitudinal research, whereby developments in knowledge, technology and methods over time, can challenge expectations that research participants may have about studies; raising important and nuanced ethical considerations.

Mari-Rose Kennedy’s presentation was followed by responses from the Mason Institute’s Catherine Heeney and Gill Haddow.

Catherine Heeney discussed access and context in relation to changes in data sharing more generally, and the ethical implications that may potentially arise.

Gill Haddow discussed some of the reasons why people take part in biobanks, and emphasised the importance of trust.