Interviews with participants of the Dunedin Multidisciplinary Health and Development Study have shown that data-sharing may have implications for the retention of participants, affecting the value of long-term sources of knowledge about health and development. A total of 25 participants (9 Māori, 16 non-Māori) aged 45-48 years were interviewed. Participants suggested that datasharing decisions should have the agreement of the whole study cohort. They expressed a sense of trust in researchers and raised concerns about loss of control after data sharing. Participants described the need to balance opportunities for public good against inappropriate uses of data, highlighting variability in perceived sensitivity of data. The study authors stated that concerns must be addressed through detailed informed consent before data-sharing occurs for lifecourse studies, particularly where this has not been established from the start of the study.
