“Keep track of your own story:” decentralized biobanking for community engagement in biospecimen research

ABSTRACT Digital transformation in biobanking has traditionally prioritized professional users, leaving patients with limited feedback regarding specimen collection and utilization. We piloted a decentralized biobanking platform designed to embed transparency, accountability, and engagement into a breast cancer biobank at a U.S. Comprehensive Cancer Center. The newly developed app integrated with institutional laboratory information management systems and featured user-friendly interfaces that provided biobank “nutrition facts,” personalized ”biowallets” for tracking specimens, and virtual “labs” for structured communication between participants and scientists. Participants recruited between February–April 2023 accessed information on population demographics, consent protocols, specimen inventory (including blood, breast tissues, and organoids), and research activities. This approach enabled digital responsibility by allowing users to explore specimen collection, allocation, and research use while engaging in voting on proposals and sharing personal data and research interests. Although the platform enhanced transparency and accountability, implementation also revealed challenges in balancing accessibility with stress and uncertainty. Our findings highlight the need for clear guidelines regarding participants’ rights to access, control, and stewardship of specimens in decentralized biobanking. These results suggest a promising new standard for digital responsibility that may generalize to other patient data use cases with further research and development.