Genomic Data Custodianship Practices in Australian Clinical, Research and Public Health Settings

This project aims to examine the practices of genomic data custodianship in the Australian context in order to help guide the development of policies and practical strategies for future data governance. It will achieve this objective through a qualitative methodology based on reliable interview and survey techniques. While the LINEAGE Phase 1 teams have identified current research concerning data custodianship, this literature is heavily focused on a narrow sector of custodians (biobanks). Broadening systemic research to a broader range of genomic data custodians will benefit both them, whose interests and experiences will be communicated back to t members of the LINEAGE consortium, who will be able to draw on the report produced by this study to develop governance approaches that take current custodianship practices into account. Having the diversity of data management and decision-making practices of genomic data custodians considered in strategies to develop a national approach for genomic information management will be of benefit to donors and patients who entrust their data to these actors and promote governance solutions based on current practices. This project will be innovative in bringing the often overlooked nuances of organisational culture and decision-making processes to the fore of data governance. Contemporary research of the practices of custodianship of health data has yet to narrow in on the field of genomic data and the aggregated forms that it takes within healthcare, research and public health settings. The project will create the basis for comparing custodial practices as they operate in regards to genomic data, as well as healthcare and research data more generally.