JMIR Publications

ABSTRACT

Background:

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 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:

1) Define implementation strategy; 2) Synthesize pilot experiences into future vision; 3) Highlight implications and potential roadblocks.

Methods:

We applied backcasting from 2021-2024 through ethnography, alignment exercises, surveys, interviews, site visits and futures workshops to map biospecimen supply chains and define principles for decentralized biobanking, utilizing 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 app user experiences and pilot reflections 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 application for patients to track their biospecimens within institutional databases. We defined the “rails, rules and tools” for a sustainable, 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 compensation and precision medicine, suggesting next steps.

Conclusions:

Reconnecting patients with their donated biospecimens via decentralized biobanking applications 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 U.S. biospecimen donors with decentralized biobanking by 2030.