Decentralized Biobanking Pathway to Precision Medicine: Futures Study

Abstract

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