Developing Patient Data Principles: enabling patients to share and receive data confidently

2023

Students on this project will assist Illumina with the development of good genomic data-sharing principles to help garner effective communication and trust among patients, physicians, and genomic researchers. Specifically, students will research and propose data-sharing principles to encourage the ethical collection, sharing, and communication of patient genomic data with their physicians and researchers. Students will also help assist with the development of guidance to inform how results from early development genomic tests should be handled for the patient in cases where the genomic test has not yet been validated.

Project Leads: Nita Farahany, J.D., Ph.D. And Michael “Buz” Waitzkin J.D.

Project Manager: Esko Brummel M.A.