Ms Vanessa Warren1
1University Of Tasmania
Genomic data sharing (GDS) deals with the secondary access and use of data that is uniquely personal. GDS occupies a challenging regulatory and ethical space, frequently characterised by the twin goals of facilitating innovation and efficiencies in research, while also maintaining ongoing social acceptance through appropriate participant protections. Public trust is coded into regulatory responses to these challenges, while in the surrounding ELSI literature consent is sometimes uncritically accepted as a proxy for trust (or vice versa).
This presentation shares early findings from a qualitative investigation into how trust in GDS is constructed by members of the Australian public. Semi-structured interviews further explored the implications of these constructions in the context of decision-making by Human Research Ethics Committees, including how the possibility of GDS being enacted through a waiver of consent might support or undermine perceived trustworthiness in this space.
Preliminary analysis appears to consolidate previous research, with participants identifying the importance of social benefits, genuine transparency, and data security in their willingness to consent to participate in GDS. However, trust in this context is emerging as a more slippery and complex heuristic, particularly where waivers of consent are concerned. Slipping across and between relational, transactional, and ideological engagements with actors and systems, trust in GDS appears to operate in a complex and dynamic interplay, mediated by perceptions of control and uncertainty not easily captured by blunt regulatory mechanisms.
Biography:
Vanessa Warren (she/her) is a doctoral candidate in the Centre for Law and Genetics at the University of Tasmania. With a background in sociology and information management, her research concerns the interactions between the social and legal norms surrounding data, power, and uncertain futures.