Sharing of Genomic Data: Exploring the Privacy Implications of the Changing Status of Genomic Data.

Abstract

This article explores the privacy implications of the changing status of genomic data and the consequences for genomic data-sharing. It sets out the theoretical framework for privacy protection in Australia and the centrality of the concept of "personal information" - information from which an individual is "reasonably identifiable". It examines the applicability of this legal framework to genomic data and the challenge from the ever-growing risk of identifiability of such data and implications for research participation and researchers' willingness to share genomic data. The article critiques the binary approach underpinning Australian privacy law based on whether data are "identified" or "de-identified" and highlights the difficulty of applying this distinction to genomic data given their changing status over time. It concludes by examining necessary reforms to provide individuals with more effective privacy protection over their genomic data and which would support data-sharing for genomic research.