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
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/resources associated with this project
https://www.cambridge.org/core/journals/data-and-policy/article/signalling-and-rich-trustworthiness-in-datadriven-healthcare-an-interdisciplinary-approach/D36DF6E9CF2F07E9F565FA3662AEC515
https://theconversation.com/government-needs-to-show-that-its-ai-plan-can-be-trusted-to-deal-with-serious-risks-when-it-comes-to-health-data-248477
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
