The research relationship: participant perspectives on consent in biobanking.

ABSTRACT:

Background

This paper examines challenges associated with the governance of large-scale biobanks. As the collection and interrogation of population-scale data is increasingly positioned as a route to new understandings of health and disease, large-scale biobanks are becoming essential elements of research infrastructure. However, their longitudinal nature presents challenges for governance, particularly in relation to consent. Typically, participants agree to specific activities at recruitment, but evolving technologies make it difficult to anticipate future research applications at this time. Using a case study from UK Biobank, we demonstrate how trying to reconcile new research activities with old consent risks overlooking critical ethical issues -particularly how the proposed ac

SUBMITTER: Thompson R 

PROVIDER: S-EPMC11992699 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature