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Trust in data sharing reflects the contextuality of the trustor-trustee relationship

Goodman, J. R.; Costa, A.; Milne, R.

2025-07-06 medical ethics
10.1101/2025.07.05.25330938 medRxiv
Show abstract

It is widely recognized that trust is an essential element in how people engage with data sharing and underpins efforts to use data to improve care quality and understand population-level health trends, and consequently improve health inequalities. However, research into public trust in the data sharing and healthcare settings may rely on oversimplified notions of what trust entails, and what is involved in trusting relationships in this setting has not been widely explored. Relatedly, the way that trust manifests as a function of perceived trustworthiness is unestablished. Here, we analyze data from 2000 participants who completed a questionnaire about how they place trust in entities including family, the healthcare system, and corporations when it comes to their personal health data. We find that the reasons people place trust differ depending on the relationship and circumstance, and suggest that trustworthiness is an underlying quality that manifests and is perceived differently under different conditions. Future work into trust relationships should account for this varying presentation of trust, and perceptions of trustworthiness, when it comes to exploration of relationships between people, institutions, and systems.

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