JMIR Publications

ABSTRACT

Background:

Biobank privacy policies strip patient identifiers from donated specimens, undermining transparency, utility and value for patients, scientists, and society. We are advancing decentralized biobanking “de-bi” applications that reconnect patients with biospecimens and facilitate engagement through a privacy-preserving nonfungible token (NFT) digital twin framework. The de-bi platform was first piloted for breast cancer biobank members.

Objective:

Demonstrate technical feasibility of 1) patient-friendly biobanking applications, 2) integration with institutional biobanks, and 3) establishing the foundation of an NFT digital twin framework for decentralized biobanking.

Methods:

We designed, developed and deployed a de-bi mobile app for a feasibility pilot from 2021-2023 in the setting of a breast cancer biobank at an NCI Comprehensive Cancer Center. The Flutter app integrated with the biobank’s laboratory information management systems (LIMS) via an IRB-approved mechanism leveraging authorized, secure devices and anonymous ID codes, complemented by a non-transferrable ERC-721 NFT representing the “soulbound” connection between an individual and their specimens. Biowallet NFTs were held within a custodial wallet, while the user experiences simulated token-gated access to personalized feedback about collection and use of individual and collective de-identified specimens. Quantified app user journeys and NFT deployment data demonstrate technical feasibility.

Results:

The de-bi app incorporated four key features: “biobank,” learn about biobanking; “biowallet,” track personal biospecimens; “labs,” follow research, and; “profile,” share data and preferences relevant to biospecimen research. 405 pilot participants downloaded the app, including 361 biobank members. Four central user journeys were captured. First, all app users were oriented to the 60,000+ biospecimen collection, and 153 completed research profiles, collectively enhancing annotations for 760 unused specimens. NFTs were minted for 140 app users with specimens at an average cost of $4.51 USD per token (range $1.84-11.23), projected to $17,769.40 USD (range $7,265.62-44,229.27) for the biobank population. 125/140 (89%) successfully claimed NFTs during the pilot, thereby tracking 1,812 personal specimens, including 202 distributed under 42 unique research protocols.

Conclusions:

Decentralized biobanking applications demonstrate technical feasibility for empowering patients to track donated biospecimens via integration with institutional biobank infrastructure. Our pilot reveals potential to accelerate biomedical research through patient engagement, however further development is needed to optimize accessibility, efficiency and scalability of platform design and blockchain elements, as well as a robust incentive and governance structure for decentralized biobanking.