The research relationship: participant perspectives on consent in biobanking

Abstract Background: This paper examines the ethical challenges associated with the governance of large-scale biobanks. As the collection and interrogation of population-scale data is increasingly positioned as the route to new understandings of health and disease, these large-scale biobanks that rely on health research governance are becoming essential elements of research infrastructure. However, their longitudinal nature presents growing challenges for governance. Typically, health research governance uses a one-off consent model where participants agree to specific activities, but evolving technologies make it difficult to anticipate future research applications at the time of consent. Using a recent case study from UK Biobank, we demonstrate how trying to reconcile new research activities with old consent forms risks overlooking critical ethical issues —particularly how the proposed activity aligns with participants’ understanding and expectation of biobank research. Methods: We report on our qualitative research with UK Biobank participants, conducting focus groups using individual and group exercises to explore their views on consent and research applications. We conducted thematic analysis of focus group transcripts applying both an inductive and deductive approach to coding, which was done using NVIVO qualitative data analysis software. Results: Our findings show that participants locate responsibility for research decisions with the biobank, rather than seeking control through their consent. They perceive their consent not as a one-off agreement but as the 'opening act' for an enduring research relationship with the biobank. Conclusions: Prioritising the ongoing research relationship and the practices that sustain it, rather than relying solely on consent procedures, can better support ethical research over time.