Providing evidence‑based guidance on how organisations can more effectively demonstrate trustworthiness in the use of genomic and health‑related data, helping the public better understand how their data are protected and strengthening confidence in data‑sharing practices.
Why the research is needed?
Access to large volumes of genomic and health-related data (GHD) is essential for much research in the clinical and life sciences. This includes data drawn from research datasets, health systems and other sources, and includes electronic health records, genomic data and other biological data. Access is facilitated by organisations that enable data use while considering and accounting for legal, ethical and public concerns about data sharing. These aim to “build and maintain the trust of data subjects and any other impacted individuals, groups, communities and organisations”, in the terms of the 2024 Sudlow Review. Understanding the conditions under which members of the public place trust in these organisations, and how these organisations can best signal trustworthiness, is therefore a pressing issue in public health and the medical sciences more broadly.
What are we doing?
We aim to address the challenges of ensuring and assessing trustworthiness within scientific research environments. This mixed‑methods study will include a literature review, focus groups, a discrete‑choice experiment, and agent‑based modelling.
How are we working with communities, services and organisations?
As part of our qualitative work, we are engaging with community members to understand what they regard as trustworthiness in the health and genomic data sharing contexts. We have also developed large quantitative surveys to best understand what specific qualities are associated with trustworthiness in this setting.
What will the impact and benefits of this research be?
Our goal is to determine and promote best practices for trustworthiness signalling, with the long-term consequence of the public being better informed about how organisations aim to keep their data safe.
What do we have planned for knowledge mobilisation and implementation?
We aim to develop research papers and a broader policy framework for informing organisations how they can best signal their trustworthiness with health and genomic data guardianship.
Related papers, outputs and resources
Read the related paper titled, 'Trust and Perceived Trustworthiness in Health-Related Data Sharing Among UK Adults: Cross-Sectional Survey'
Read the related article titled 'Signalling and rich trustworthiness in data-driven healthcare: an interdisciplinary approach'
For more information about this research, read an article on The Conversation
Who is involved?
- Richard Milne, University of Cambridge and the Wellcome Sanger Institute
- Dr Jonathan R Goodman, University of Cambridge and the Wellcome Sanger Institute
- Dr Rory Cameron, University of East Anglia
Get in contact
Email Dr Jonathan R Goodman at jrg74@cam.ac.uk.
