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SUMMARY:The Ethics of Donation under Double Uncertainty
DTSTART;TZID=Europe/London:20260623T110000
DTEND;TZID=Europe/London:20260623T123000
DTSTAMP:20260606T083245Z
UID:2212dc33-a64f-f111-bec6-7ced8d99a758
CREATED:20260514T150433Z
DESCRIPTION:Informed consent is a cornerstone of biomedical research ethic
 s\, whose normative force is typically grounded in respect for the autonom
 y of research participants. We argue\, however\, that informed consent can
 not bear the full justificatory weight commonly placed upon it in research
  domains characterized by what we call ‘double uncertainty’: substanti
 al epistemic uncertainty about the future uses of donated biospecimens and
  derived data\, combined with substantial moral uncertainty about the ethi
 cal significance of those uses. Paradigm cases arise in cutting-edge stem 
 cell research involving embryo models and organoids. In these domains\, ne
 ither donors nor scientific experts can fully anticipate what research tra
 jectories donated materials will follow\, what data will be generated\, wh
 ich ethical questions will emerge as the science develops\, and which deve
 lopmental thresholds will prove morally significant. This ignorance is not
  accidental but structural\, built into the frontier nature of the science
  itself\; hence it cannot be resolved by merely adopting a relational conc
 eption of autonomy in place of an individualistic one\, nor by more sophis
 ticated consent modes such as technology-supported dynamic consent. While 
 informed consent retains ethical value—signalling a donor’s willingnes
 s to participate and helping to avert coercion—it cannot\, under these c
 onditions\, constitute genuinely autonomy-respecting authorization for don
 ation. Our argument therefore shifts normative attention from donor consen
 t to institutional accountability: the development of oversight mechanisms
 \, publicly defensible criteria for permissible research use of donated ma
 terials\, and participatory governance structures capable of safeguarding 
 donor rights and interests under conditions of limited foresight.
LAST-MODIFIED:20260514T150731Z
LOCATION:Big Data Institute - Lower Ground Seminar Room 0\, Lower Ground S
 eminar Room 0 Big Data Institute Old Road Campus Oxford Oxfordshire OX3 7L
 F United Kingdom
SPEAKER:Tsutomu Sawai (Hiroshima University)
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