Australian public perspectives on genomic data storage and sharing: Benefits, concerns and access preferences

Abstract

Diagnostic genomic sequencing generates unprecedented amounts of data. In addition to its primary use, this data could be used for a wide range of secondary purposes, including research and informing future healthcare for the data donor. These opportunities may require data to be shared with third parties. Although effective data sharing relies on public support, there are barriers which may prevent people from choosing to donate their genomic data and surprisingly few studies explore these barriers in depth. To address this need, this study aimed to qualitatively explore the Australian public's views and preferences for storing and sharing genomic data. Online focus groups were recorded, tr..