Authors
Signe Mežinska, Anna Žabicka, Elita Poplavska
Published in
Monash bioethics review. Sep 18, 2026. Epub Sep 18, 2026.
Abstract
The translation of basic neurodegenerative disease research into early-phase human studies raises ethical questions that extend beyond traditional assessments of risk and benefit. This study explores how researchers themselves experience and reason about these ethical challenges in their everyday work. Using an empirical bioethics approach, we analyse four focus group discussions with researchers from several European countries. The findings reveal interconnected ethical tensions related to uncertainty in translation, responsibility for future patient safety, pressures shaping scientific communication, and ambivalence toward patient and public involvement. Participants described particular concern about overstating early findings and generating false hope, while simultaneously emphasising the moral importance of rigorous science and attentiveness to patient vulnerability. Rather than framing ethical reflection primarily in terms of abstract principles, researchers articulated responsibilities grounded in care, relational accountability and responsiveness to the lived realities of neurodegenerative illness. These experiences reveal how values commonly associated with care ethics are already enacted in practice, shaping how researchers navigate communication and decision-making under uncertainty. Our findings support greater recognition of care as a practical ethical orientation embedded in translational research, and institutional cultures that prioritise reflection and responsibility over accelerated translation.
PMID:
42758461
Bibliographic data and abstract were imported from PubMed on 19 Sep 2026.
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