Towards a Trusted Genomic Repository: Tackling Commercialisation Fears

Project Lead

Dr Brad Elphinstone | Swinburne University of Technology

External Collaborators

• Associate Prof Mark Taylor
• Mr Jarrod Walsh

CLG collaborators

• Prof Dianne Nicol

Funding Source: Medical Research Future Fund-Genomics Health Future Mission ELSI scheme ($484,000)

Project Duration: 2020-2023

Project Status: Current

Project Summary

Nicol is a CI on this project, which was originally led by our highly respected CLG colleague Professor Christine Critchley. Following Christine’s tragic passing in 2020, Dr Brad Elphinstone took over leadership of the project. The project focuses on the governance arrangements that will need to be put in place in order for a National Genomic Data Repository to maintain public trust. Via empirical public research this project aims to provide the evidence needed to tackle the tension between public trust and commercial use of repository data. We are aiming to uncover reasons for concern by identifying publics with distinct views on different aspects of commercialisation, thereby enabling tailored engagement and communication strategies. Doctrinal and policy research into existing governance arrangements are also being undertaken. Contextualising the outputs within national and international obligations will provide an evidence base for targeted recommendations to promote trust.