Personalized Medicine Through Personal Data Pods

In Proceedings of the 15th International SWAT4HCLS Conference (2024)

Medical care is in the process of becoming increasingly personalized through the use of patient genetic information. Concurrently, privacy concerns regarding collection and storage of sensitive personal genome sequence data have necessitated public debate and legal regulation. Here we identify two fundamental challenges associated with privacy and shareability of genomic data storage and propose the use of Solid pods to address these challenges. We establish that personal data pods using Solid specifications can enable decentralized storage, increased patient control over their data, and support of Linked Data formats, which when combined, could offer solutions to challenges currently restricting personalized medicine in practice.