Abstract
Sharing the data upon which scientific findings are based has been gaining traction in social science research. Current literature suggests that while data-sharing policies should be tailored to suit the populations they are implemented in, generic approaches are more likely to be adopted. Past research has focused on funders’ and researchers’ data-sharing perspectives, while neglecting participant populations such as ongoing longitudinal research participants. As they provide ongoing consent for additional and previously-collected data to be stored, analysed and disseminated, it is crucial to understand the perspectives of this population. The aim of the present thesis was to provide insight regarding the ethical issues of data-sharing from the perspective of participants in the Dunedin Multidisciplinary Health and Development Study (the Dunedin Study), which maintains a cohort size of just under 1000 members and completed the phase age 45 testing in early 2019. Two central research questions were addressed:
1. What do members of the Dunedin Study perceive to be the benefits and detriments of different data-sharing scenarios?
2. To what extent do members of the Dunedin Study think the sharing of research data is appropriate in the context of previously-collected data and data collected in the future?
Twelve Study members (four women and eight men, of whom three were Māori and nine non-Māori) with an age range of 45-46 years, and educational backgrounds ranging from no formal qualifications to postgraduate tertiary qualifications, were recruited. They participated in one-on-one interviews, wherein they reflected on real and hypothetical data-sharing scenarios. The interviews were recorded and transcribed, and a constructivist Grounded Theory approach was adopted for the analysis. The result was a novel conceptual model grounded in rich qualitative data which, at its core, posits that the existence of ‘Reciprocal relations within the Dunedin Study’ are the foundation upon which data-sharing decisions are made. Four sequential premises follow the theorised thought process that participants collectively underwent when prompted with different hypothetical data-sharing scenarios. The first premise is that ‘data-sharing scenarios highlight business considerations over human considerations’. The second premise posits that ‘data-sharing creates tension between public good and commodification’. The following premise outlines Dunedin Study members’ ‘concerns about data commercialisation’, while the final argument asserts that ‘the challenge for the research team is balancing the business and human sides of the Dunedin Study’. Within the conceptualised model, four sub-categories to the core category were expounded. These categories describe participants’ decisions about ‘determining who speaks on behalf of whom’; ‘assigning value to Dunedin Study data’; ‘establishing who benefits from data-sharing’; and ‘maintaining control over data by setting conditions’. The findings of the present study provide initial evidence that a trusting relationship with the research team, bespoke conditions, and increased consultation are requirements for longitudinal research participants if wider data-sharing policies are to be implemented in their research context. Specific recommendations about the Dunedin Study’s data-sharing policies are presented, and implications about data sovereignty extending to wider research contexts are outlined.