Survey Examines Professional Attitudes Toward Personal Genomic Data Ownership

While an individual having ownership of their genomic data is widely supported by professional stakeholders, concerns over the implications and extent of such ownership persist, according to a study appearing in the European Journal of Human Genetics. A growing body of research suggests that establishing patient genomic data ownership may help in responsibly balancing personal privacy with the advancement of medical science. To get additional perspective, investigators from the Commonwealth Scientific and Industrial Research Organization in Australia surveyed 117 genomic professionals — including geneticists, genetic counsellors, bioinformaticians, and researchers — about their views of people owning their own genomic data. They report that the majority of these professionals had favorable views on the matter, but that some patient-facing professionals expressed potential risks of extending patient rights from controlling and deciding who uses their data to full patient ownership. The survey also indicates that a "stronger health system infrastructure is a prerequisite for enabling patient data ownership, which needs to be underpinned by appropriate digital infrastructure … patient identity ownership … and policy at both federal and state levels," the researchers write.