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Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management

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Decentralized Biobanking Pathway to Precision Medicine: Futures Study.

Marielle Gross^1,2,3, Ananya Dewan⁴, Kennedy Sabharwal⁵

¹Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, United States.

Journal of Medical Internet Research

|December 2, 2025

Summary

This summary is machine-generated.

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.

Keywords:

NFTs backcasting biobanking biospecimens blockchain technology decentralized biobanking futures methods futures wheel learning health system non-fungible tokens participatory research patient empowerment precision medicine visioning

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Establishment of a Clinic-based Biorepository

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Published on: May 29, 2017

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.