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Decentralized Biobanking Pathway to Precision Medicine: Futures Study
Marielle Gross1,2,3, Ananya Dewan4, Kennedy Sabharwal5
1Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, United States.
Journal of Medical Internet Research
|December 2, 2025
Summary
Decentralized biobanking unites patients, specimens, and physicians on a blockchain platform, enhancing precision medicine. This study outlines a practical strategy for its implementation, empowering patients as research partners.
Area of Science:
- Biomedical Informatics
- Genomics
- Data Science
Background:
- Current biobank privacy policies fragment data and hinder precision medicine by isolating patients and limiting multimodal data use.
- Decentralized biobanking offers a novel paradigm using blockchain for secure data sharing, uniting stakeholders with incentives and ethical oversight.
Purpose of the Study:
- To define an implementation strategy for decentralized biobanking.
- To synthesize pilot experiences into a future vision for decentralized biobanking.
- To identify potential challenges and implications of this new approach.
Main Methods:
- Employed backcasting (2021-2024) incorporating ethnography, surveys, interviews, and futures workshops.
- Mapped biospecimen supply chains and established principles for decentralized biobanking.
- Utilized a breast cancer biobank for prototyping and piloted a decentralized biobanking app for participatory visioning.
Main Results:
- Developed an app enabling patients to track biospecimens, defining essential "rails, rules, and tools" for a functional "Biomediverse."
- Pilot enrollment was successful, increasing biobank participation and revealing themes of dignity, recognition, and empowerment.
- A user journey vision, "From 'Lab Rat' to Research Partner," emerged, highlighting gratitude, unity, and the potential for precision medicine.
Conclusions:
- Decentralized biobanking apps reconnect patients with their biospecimens, unlocking value and aligning incentives for a person-centered biomedical data economy.
- The study advocates for enabling all US biospecimen donors with decentralized biobanking by 2030.
