“Realising the value of genomic and other health data relies on addressing questions around security, privacy and informed consent, achieving the goals of protecting the interests of data subjects while maximising research access. One approach to this challenge has been to consider models of governance and decision-making related to data collection and use. Specifically, a growing number of these initiatives aim to provide people with greater say in data use while improving access to data for research.
Much of the literature around research governance approaches that include public or participant perspectives has, to date, been theoretical or focussed on proposing possible models. However, there is a need for practical experimentation with alternative models, to consider what works and what can be learned from efforts to engage and involve members of the public as potential or actual research participants.
This talk considers how meaningful public involvement in decision making about data can be achieved, drawing on the experience of participant engagement and involvement in biobanking and longitudinal research. It describes how existing approaches establish differing spaces for incorporating participant perspectives into decision-making, and considers the strengths and limitations of these models.”
Milne (2019) Learning from experiments in public and participant involvement. Invited presentation at the 6th International Workshop on Genome Privacy and Security (GenoPri'19) Boston, USA, 21st October