Published: March 15, 2025

Biobank privacy policies remove identifiers from donated specimens, siloing patients, discounting multi-modal data, and hindering precision medicine. Decentralized biobanking is a new paradigm that unlocks value by uniting scientists physicians in blockchain-backed platform with robust incentives, governance ethical oversight. Informed real-world pilot, this mixed-methods futures study explores how we advance decentralized theory to practice. 1) Define implementation strategy; 2) Synthesize pilot experiences into future vision; 3) Highlight implications potential roadblocks. We applied backcasting 2021-2024 through ethnography, alignment exercises, surveys, interviews, site visits workshops map biospecimen supply chains define principles for biobanking, utilizing breast cancer biobank prototyping software development. A app was piloted engage members participatory visioning. Thematic analysis of user reflections revealed technology-enabled vision. systematically analyzed the event via Futures Wheel, organizing participant quotes as first order effects, indirect anticipated implications. Backcasting unveiled pathway designing an initial application patients track their biospecimens within institutional databases. defined “rails, rules tools” sustainable, effective, structurally just Biomediverse. Pilot enrollment robust, concurrent increased. Qualitative themes impact on dignity, recognition, understanding, belonging, ownership, empowerment. vision emerged journeys: “From ‘Lab Rat’ Research Partner,” vividly depicted path transitioning sterile graveyard flourishing community garden. Primary were matched effects implications, culminating gratitude unity, network reinforced reciprocity, well compensation medicine, suggesting next steps. Reconnecting applications aligns incentives across illuminate person-centered biomedical data economy put forward goal enabling all U.S. donors 2030.

Language: Английский