
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