Having Our “Omic” Cake and Eating It Too?: Evaluating User Response to Using Blockchain Technology for Private and Secure Health Data Management and Sharing

Lemieux, Victoria L.; Hofman, Darra; Hamouda, Hoda; Batista, Danielle; Kaur, Ramneet; Pan, Wen; Costanzo, Ian; Regier, Dean A.; Pollard, Samantha; Weymann, Deirdre; Fraser, Rob W.

doi:10.3389/fbloc.2020.558705

Cited by 14 publications

(7 citation statements)

References 36 publications

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“…A potential benefit of DLT in genomics discussed in the literature is user empowerment . 15 , 21 , 34 DLT allows self-governance of users’ genetic data. 11 , 39 Further, DLT gives users options for consent management.…”

Section: Resultsmentioning

confidence: 99%

“…The initial search was conducted in 09/2020 and was updated in 08/2021; overall, resulting in 468 articles. Finally, we identified additional sources through a forward and backward search ( n = 32) on our base literature set, 20 and also manually added one more article to the list of potentially relevant studies (ie, Lemieux et al 21 ) In total, we identified 501 potentially relevant studies.…”

Section: Methodsmentioning

confidence: 99%

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A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research

Beyene

Toussaint

Thiebes

et al. 2022

Journal of the American Medical Informatics Association

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Objective Rising interests in distributed ledger technology (DLT) and genomics have sparked various interdisciplinary research streams with a proliferating number of scattered publications investigating the application of DLT in genomics. This review aims to uncover the current state of research on DLT in genomics, in terms of focal research themes and directions for future research. Materials and Methods We conducted a scoping review and thematic analysis. To identify the 60 relevant papers, we queried Scopus, Web of Science, PubMed, ACM Digital Library, IEEE Xplore, arXiv, and BiorXiv. Results Our analysis resulted in 7 focal themes on DLT in genomics discussed in literature, namely: (1) Data economy and sharing; (2) Data management; (3) Data protection; (4) Data storage; (5) Decentralized data analysis; (6) Proof of useful work; and (7) Ethical, legal, and social implications. Discussion Based on the identified themes, we present 7 future research directions: (1) Investigate opportunities for the application of DLT concepts other than Blockchain; (2) Explore people’s attitudes and behaviors regarding the commodification of genetic data through DLT-based genetic data markets; (3) Examine opportunities for joint consent management via DLT; (4) Investigate and evaluate data storage models appropriate for DLT; (5) Research the regulation-compliant use of DLT in healthcare information systems; (6) Investigate alternative consensus mechanisms based on Proof of Useful Work; and (7) Explore DLT-enabled approaches for the protection of genetic data ensuring user privacy. Conclusion While research on DLT in genomics is currently growing, there are many unresolved problems. This literature review outlines extant research and provides future directions for researchers and practitioners.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research

Beyene

Toussaint

Thiebes

et al. 2022

Journal of the American Medical Informatics Association

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“…In academia, discussions on the application of blockchain technology to medical information systems have continued for several years, and most scholars have given positive answers and raised challenges [66], [67], [68], [69]. Asaph Azaria and his colleagues proposed MedRec [40] in 2016, a decentralized record management system using the blockchain technology.…”

Section: Comparison To Other Related Workmentioning

confidence: 99%

Security and Privacy for Healthcare Blockchains

Zhang

Xue

Liu

2022

IEEE Trans. Serv. Comput.

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Healthcare blockchains provide an innovative way to store healthcare information, execute healthcare transactions, and build trust for healthcare data sharing and data integration in a decentralized open healthcare network environment. Although the healthcare blockchain technology has attracted broad interests and attention in industry, government and academia, the security and privacy concerns remain the focus of debate when deploying blockchains for information sharing in the healthcare sector from business operation to research collaboration. This paper focuses on the security and privacy requirements for medical data sharing using blockchain, and provides a comprehensive analysis of the security and privacy risks and requirements, accompanied by technical solution techniques and strategies. First, we discuss the security and privacy requirements and attributes required for electronic medical data sharing by deploying the healthcare blockchain. Second, we categorize existing efforts into three reference blockchain usage scenarios for electronic medical data sharing, and discuss the technologies for implementing these security and privacy properties in the three categories of usage scenarios for healthcare blockchain, such as anonymous signatures, attribute-based encryption, zero-knowledge proofs, verification techniques for smart contract security. Finally, we discuss other potential blockchain application scenarios in healthcare sector. We conjecture that this survey will help healthcare professionals, decision makers, and healthcare service developers to gain technical and intuitive insights into the security and privacy of healthcare blockchains in terms of concepts, risks, requirements, development and deployment technologies and systems.

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“…Recently, solutions based on decentralized identity blockchains have received the attention of some researchers: Belchior et al proposed an SSI-based access control solution, which shows how DIDs and VCs can be integrated with attribute-based access control in a federated setting, minimizing data disclosure and data redundancy; 5 Liu et al proposed an SSI-based solution for multimedia data management; 6 Papadopoulos et al presented a privacy-preserving decentralized workflow that facilitates trusted federated learning among participants; 7 and Lemieux et al proposed a self-sovereign health data management solution, where VCs were used to enable privacy-preserving sharing of personally-identifiable health data. 8 However, the existing solutions do not address the problem of preventing the unauthorized usage of the data after the identity or other data have been shared.…”

Section: Introductionmentioning

confidence: 99%

“…The solution also leverages prior work on self-sovereign health data management, which introduces a privacy preserving and secure solution for self-sovereign data holders to share their health data for research purposes. 8 Thus, we combine the flipped PRIV-DRM model with use of Decentralized Identifiers (DIDs) and Verifiable Credentials (VCs) to establish a self-sovereign oriented distributed trust architecture. We add FHE capabilities to achieve additional privacy protection and data usage control.…”

Section: Introductionmentioning

confidence: 99%

A Decentralized Identity-Based Blockchain Solution for Privacy-Preserving Licensing of Individual-Controlled Data to Prevent Unauthorized Secondary Data Usage

Meng

Lemieux

2021

ledger

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This paper presents a design for a blockchain solution aimed at the prevention of unauthorized secondary use of data. This solution brings together advances from the fields of identity management, confidential computing, and advanced data usage control. In the area of identity management, the solution is aligned with emerging decentralized identity standards: decentralized identifiers (DIDs), DID communication and verifiable credentials (VCs). In respect to confidential computing, the Cheon-Kim-Kim-Song (CKKS) fully homomorphic encryption (FHE) scheme is incorporated with the system to protect the privacy of the individual’s data and prevent unauthorized secondary use when being shared with potential users. In the area of advanced data usage control, the solution leverages the PRIV-DRM solution architecture to derive a novel approach to licensing of data usage to prevent unauthorized secondary usage of data held by individuals. Specifically, our design covers necessary roles in the data-sharing ecosystem: the issuer of personal data, the individual holder of the personal data (i.e., the data subject), a trusted data storage manager, a trusted license distributor, and the data consumer. The proof-of-concept implementation utilizes the decentralized identity framework being developed by the Hyperledger Indy/Aries project. A genomic data licensing use case is evaluated, which shows the feasibility and scalability of the solution.

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Having Our “Omic” Cake and Eating It Too?: Evaluating User Response to Using Blockchain Technology for Private and Secure Health Data Management and Sharing

Cited by 14 publications

References 36 publications

A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research

A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research

Security and Privacy for Healthcare Blockchains

A Decentralized Identity-Based Blockchain Solution for Privacy-Preserving Licensing of Individual-Controlled Data to Prevent Unauthorized Secondary Data Usage

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