Decentralized biobanking revolutionises patient empowerment and precision medicine by 2030

Decentralized biobanking is emerging as a transformative paradigm in biomedical research and precision medicine by fundamentally reconnecting patients with their donated biospecimens. Traditionally, biospecimens, such as tissue and blood samples collected during clinical procedures, are anonymized to protect privacy, severing the patient’s link to their samples. This practice, while protective, has contributed to ambiguous ownership, misaligned incentives, and underutilization of valuable biological assets, limiting opportunities for precision medicine and patient benefit. A recent mixed-methods futures study, piloted in a large breast cancer biobank, investigates how decentralized biobanking, supported by blockchain technology and novel software applications, can establish a person-centered biomedical data ecosystem by 2030.

Under the current model, biospecimens and their associated data remain siloed, preventing integration with patient clinical outcomes, genomics, or lifestyle data, which would otherwise enhance understanding of disease mechanisms and treatment responses. Decentralized biobanking proposes a digital twin framework with blockchain-backed non-fungible tokens (NFTs) representing biospecimens and related stakeholders as immutable, secure digital assets. This infrastructure supports privacy, transparency, and traceability, enabling patients to track their donated specimens throughout the research lifecycle while maintaining compliance with deidentification protocols.

The study employed backcasting, a strategic planning method starting from a desired future state of a fully integrated and ethically governed “Biomediverse” ecosystem where patients, scientists, and institutions collaborate transparently, and worked backward to identify necessary technological, ethical, and operational milestones. Engaging more than 1,000 biobank participants in a real-world pilot, the project developed and deployed a mobile app allowing patients to monitor their biospecimen donations, learn about associated research, and express preferences regarding sample use. The pilot achieved robust engagement, with nearly 10% of eligible members enrolling and a notable 65% increase in biobank enrollments during recruitment.

Qualitative analyses revealed profound shifts in patient perceptions, transitioning from feelings of disconnection and objectification to dignity, recognition, understanding, belonging, ownership, and empowerment. Pilot participants described moving “from lab rat to research partner,” illustrating their new collaborative role in advancing science. The app fostered a sense of community among donors with similar diagnoses and facilitated personal narratives about the value and legacy of their contributions. Participants expressed appreciation for the transparency and the opportunity to be acknowledged as active contributors rather than anonymous subjects.

Beyond direct effects, a futures wheel analysis highlighted broader implications, including increased advocacy, solidarity, and potential for just compensation models, as well as enhanced precision medicine through better specimen utilization. However, concerns about commercialization ethics and protecting patient sovereignty underline the need for carefully designed governance with clear communication to maintain trust and institutional credibility.

Technically, the platform leveraged blockchain's immutability and transparency to provide secure specimen tracking without exposing sensitive patient data, using “soul-bound” NFTs for personalized access. The app’s features included specimen tracking, community engagement, and options for clinical data sharing, designed with low onboarding friction inspired by digital banking interfaces. The integration carefully balanced privacy-by-design principles with scalable and composable software architecture, promoting seamless adoption in existing biobanking workflows.

The authors emphasised that decentralized biobanking offers a pathway to address the current underutilization and fragmentation of biospecimens while empowering patients and aligning incentives across the research ecosystem. They advocate a phased approach prioritising specimen tracking as an initial step to rebuild trust and activate collaborative networks. Future developments envision integrating more complex datasets, supporting longitudinal studies, and implementing revenue-sharing models that benefit patients ethically.

Challenges remain, including regulatory constraints on returning results and clinical applicability of research findings, the need to expand beyond demographic limitations of pilot populations, and institutional resistance due to entrenched interests. Additionally, further research is required to refine patient engagement, govern commercialization ethically, and develop robust technical solutions for cost-effective, secure blockchain applications.

Ultimately, the study positions decentralized biobanking as a critical innovation to catalyze a biomedical "metaverse" that seamlessly integrates patients into precision medicine research, fostering transparency, reciprocity, and social value. By restoring visibility and control over biospecimens to donors, this model aims to unlock untapped scientific potential, enhance research efficiency, and improve patient outcomes in cancer and beyond.