Applying the public interest imperative for access to secondary health data in practice
Marthe Smedinga1, Hui Jin Toh1, Tamra Lysaght1, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore 1Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore Singapore
Abstract
The ethical imperative for research to be in the public interest is an oft-used feature in regulatory frameworks governing access to health data. However, the term ‘public interest’ is rarely defined and there is a lack of guidance for practitioners applying the requirement. The bioethics literature has proposed useful definitions that distinguish public interest from other concepts, such as social value. Criteria have also been proposed to establish the public interest imperative to consent waivers for access to identifiable health data. However, it is unclear whether or how the proposed definitions and criteria should apply to de-identified sources of linked health data where broad consent has been previously obtained or if they would fit into the current practice in which requests to access to health data is reviewed.
We aim to bridge this gap with an examination of the public interest imperative for research accessing the national health data-sharing platform in Singapore. This platform will store and link large volumes of de-identified data sourced from across the research, health and public service sectors. Cross-sectorial data will include genome, lifestyle and government administrative data. While a public interest test is required for access to these datasets, practical guidance is currently missing. We lay out how well existing theoretical approaches apply to the public interest imperative in governing cross-sectorial datasets, taking into consideration the practicality of the proposed criteria and ways to incorporate public expectations for health data governance. We discuss the implications for those tasked with assessing the public interest imperative.
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