Decentralized Biobanking Applications Empower Personalized Tracking of Biospecimen Research: Technology Feasibility (Preprint)

JMIR Bioinformatics and Biotechnology, Journal Year: 2025, Volume and Issue: 6, P. e70463 - e70463

Published: March 4, 2025

Biobank privacy policies strip patient identifiers from donated specimens, undermining transparency, utility, and value for patients, scientists, society. We are advancing decentralized biobanking apps that reconnect patients with biospecimens facilitate engagement through a privacy-preserving nonfungible token (NFT) digital twin framework. The platform was first piloted breast cancer biobank members. This study aimed to demonstrate the technical feasibility of (1) patient-friendly apps, (2) integration institutional biobanks, (3) establishing foundation an NFT framework biobanking. designed, developed, deployed mobile app pilot 2021 2023 in setting at National Cancer Institute comprehensive center. Flutter integrated biobank's laboratory information management systems via review board-approved mechanism leveraging authorized, secure devices anonymous ID codes complemented nontransferable ERC-721 representing soul-bound connection between individual their specimens. Biowallet NFTs were held within custodial wallet, whereas user experiences simulated token-gated access personalized feedback about collection use collective deidentified Quantified journeys deployment data design workshop feedback. incorporated key features: "biobank" (learn biobanking), "biowallet" (track personal biospecimens), "labs" (follow research), "profile" (share preferences). In total, 405 participants downloaded app, including 361 (89.1%) A total 4 central captured. First, all users oriented ≥60,000-biospecimen collection, 37.8% (153/405) completed research profiles, collectively enhancing annotations 760 unused minted 94.6% (140/148) specimens average cost US $4.51 (SD $2.54; range $1.84-$11.23) per token, projected $17,769.40 $159.52; $7265.62-$44,229.27) population. 89.3% (125/140) successfully claimed during pilot, thereby tracking 1812 202 (11.2%) distributed under 42 unique protocols. Participants embraced opportunity direct feedback, community engagement, potential health benefits, although onboarding requires further refinement. Decentralized empowering track infrastructure. Our reveals accelerate biomedical engagement; however, development is needed optimize accessibility, efficiency, scalability blockchain elements, as well robust incentive governance structure

Language: Английский

Informed Consensus: The Future of Respect for Persons in Biomedical Research

The American Journal of Bioethics, Journal Year: 2025, Volume and Issue: 25(4), P. 142 - 144

Published: April 3, 2025

Language: Английский

Decentralized Biobanking for the Future of Precision Medicine (Preprint)

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