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

Person-centred data sharing: empirical studies in private individuals’ attitudes
Person-centred data sharing: empirical studies in private individuals’ attitudes
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.
Trusted research environment, Cybersecurity awareness, privacy attitudes, Data sharing, 5 Safes +1, FAIR, CARE
Pickering, Brian
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Boniface, Michael
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Roth, Silke
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Baker, Katie
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Taylor, Steve
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Pickering, Brian
225088d0-729e-4f17-afe2-1ad1193ccae6
Boniface, Michael
f30bfd7d-20ed-451b-b405-34e3e22fdfba
Roth, Silke
cd4e63d8-bd84-45c1-b317-5850d2a362b6
Baker, Katie
810b0c36-d734-458f-b9e6-4c90d6d2daa2
Taylor, Steve
9ee68548-2096-4d91-a122-bbde65f91efb

Pickering, Brian, Boniface, Michael, Roth, Silke, Baker, Katie and Taylor, Steve (2024) Person-centred data sharing: empirical studies in private individuals’ attitudes. Open Research Europe, 4 (84). (doi:10.12688/openreseurope.17330.1).

Record type: Article

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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Submitted date: 9 February 2024
Accepted/In Press date: 12 March 2024
e-pub ahead of print date: 24 April 2024
Published date: 24 April 2024
Keywords: Trusted research environment, Cybersecurity awareness, privacy attitudes, Data sharing, 5 Safes +1, FAIR, CARE

Identifiers

Local EPrints ID: 486894
URI: http://eprints.soton.ac.uk/id/eprint/486894
PURE UUID: 75230169-16ff-46c2-be05-50c4be6aeb36
ORCID for Brian Pickering: ORCID iD orcid.org/0000-0002-6815-2938
ORCID for Michael Boniface: ORCID iD orcid.org/0000-0002-9281-6095
ORCID for Silke Roth: ORCID iD orcid.org/0000-0002-8760-0505
ORCID for Steve Taylor: ORCID iD orcid.org/0000-0002-9937-1762

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Date deposited: 08 Feb 2024 17:36
Last modified: 23 May 2024 04:01

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Contributors

Author: Brian Pickering ORCID iD
Author: Silke Roth ORCID iD
Author: Katie Baker
Author: Steve Taylor ORCID iD

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