Is blockchain the breakthrough we are looking for to facilitate genomic data sharing? The European Union perspective. (July 2022)

• Record Type: Journal Article
• Authors: Cascini, Fidelia; Beccia, Flavia; Causio, Francesco A; Gentili, Andrea; Melnyk, Andriy; Boccia, Stefania; Ricciardi, Walter
• Is Part Of: Digital health. Volume 8(2022)
• Publication Date: 2022-07
• Subjects: Genomics -- blockchain -- data -- tokenization -- distributed ledger -- European Union; Medical care -- Data processing -- Periodicals; Medical informatics -- Periodicals; 362.10285
• DOI: 10.1177/20552076221114225
• Languages: English
• ISSNs: 2055-2076

Abstract

The recent progress of genomics research is providing unprecedented insight into human genetic variance, susceptibility to disease and risk stratification. Current trends predict that a massive amount of genomic data will be produced in the upcoming years which, when coupled with the fast-paced development of the field, will create new social, ethical, and legal challenges. In the complex legislative environment of the European Union, genomic data sharing policies will have to weigh the benefits of scientific discovery against the ethical risks posed by the act of sharing sensitive data. In this complex, interconnected environment, blockchain provides a unique and novel solution to accountability, traceability, and transparency issues regarding genomic data sharing. Implementing a distributed ledger technology-based database could empower both patients and citizens to responsibly use genomic data pertaining to them because it allows for a higher degree of control over the recipients of their data and their uses. The blockchain technology will engage both data owners and policymakers to address the multiple issues of genomic data sharing and allow us to redefine the way we look at genomics.