The TAGD project addresses the challenge of ensuring and assessing trustworthiness within scientific research environments. It focuses specifically on the case of genomic and health data but has wider relevance to any context in which open vs restricted or managed access to resources is in question and the trustworthiness of those handling those resources is a consideration.
Background
The TAGD project addresses the challenge of ensuring and assessing trustworthiness within scientific research environments. It focuses specifically on the case of genomic and health data but has wider relevance to any context in which open vs restricted or managed access to resources is in question and the trustworthiness of those handling those resources is a consideration.
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. They include biobanks, bioresources and research consortia and emerging alternative arrangements such as data trusts or data cooperatives. They make data available under a range of access models, from immediate open access to forms of registered or managed access, with those that involve some level of control through management most common in contemporary genomics research.
Project Aims
The specific research questions for this project are:
- What qualities of those entrusted with genomic and health data do members of the public associate with trustworthiness?
- Do different groups of people assess the qualities associated with trustworthiness differently?
- Are the valued qualities of the trustee consistent across trustors?
- Are the actions or features of trustees that are taken to manifest these qualities consistent across trustors and relatedly, what factors (social, political, educational or cultural) predict consistency or difference?
- Is it possible to develop a coherent model of trustworthiness using these insights from the public?
Project Activity
This project involves mixed methods, including a literature review, focus groups, a discrete-choice experiment, and agent-based modelling.
Anticipated or actual outputs
We aim to determine how expert institutions can best signal their trustworthiness around health and genomic data usage to the public.
Papers and resources
For more information about this research, read the related article on The Conversation
Who is involved?
- Richard Milne, University of Cambridge and the Wellcome Sanger Institute
- Jonathan R Goodman, University of Cambridge and the Wellcome Sanger Institute (corresponding researcher)
- Rory Cameron, University of East Anglia
Contact
Jonathan Goodman, jrg74@cam.ac.uk
