Person-centred data sharing: empirical studies in private individuals’ attitudes

Abstract

Recognising the power of data analytics, researchers are anxious to gain access to personal data either directly from data subjects or via research data sets. Processing such data requires a secure environment, sometimes referred to as a trusted research environment (TRE). However, it is unclear how the data subjects themselves would regard sharing their data with TREs, especially if the outcome of such research was difficult to specify upfront making the idea of informed consent difficult to manage. In this paper, we review three empirical studies about data sharing to throw some light on private individual attitudes to sharing data, especially health data. The first focuses on cybersecurity, demonstrating that private individuals can make decisions about security measures though usually assume that the recipient of their personal data to be responsible for all aspects of keeping the data safe. The second asks how private individuals make decisions to share their data, and highlights that individuals are aware of risks but are motivated to share their data based on different contextual assumptions. The third looks at the incidental sharing of sensitive data during a saliva testing pilot during the SARS-CoV-2 pandemic and highlights prosocial motivations which override even the potential benefit of such testing. Taken together, these studies contribute to the complex set of motivations which encourage data sharing in general and highlight eight specific challenges for those wishing to manage a trusted research environment.

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Identifiers

ORCID for Brian Pickering: orcid.org/0000-0002-6815-2938

ORCID for Michael Boniface: orcid.org/0000-0002-9281-6095

ORCID for Silke Roth: orcid.org/0000-0002-8760-0505

ORCID for Steve Taylor: orcid.org/0000-0002-9937-1762

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