Stephanie completed a Bachelor of Science (Viticulture and Oenology) at Curtin University of Technology, graduating in 2008, before going on to complete a Juris Doctor with the University of Melbourne (graduating in 2012). With an interest in social justice, she went on to work in native title (in Melbourne) and a community legal centre (in Perth). In 2016 she commenced her LL.M. (International and European Public Law) at KU Leuven in Belgium, and during this time was fortunate to be able to work as a research assistant with the Centre for Biomedical Ethics and Law. Her work in this regard sparked an interest in genomic data sharing, which prompted her to apply for a position with the Centre for Law and Genetics at the University of Tasmania upon her return to Australia. She commenced her PhD in genomic data sharing, under an RTP scholarship, in February 2019.
“Anything you can do, I can do better”: Is the spectre of participant consent driving duplicative data access assessments?
Genomic data sharing (or GDS) is the sharing of an individual’s genomic data which has been collected for one purpose, and is then shared for other, different, research purposes. The research conducted on genomic data is in the health and medical field, and this data is often linked with other types of data (such as an individual’s medical history), in order to derive conclusions in relation to things like disease risk. GDS is an efficient use of limited resources because it allows for the repeated use of the same data with the aim of uncovering new connections, for example, between genes and the environment, or genes and medication. However, because it involves research concerning human subjects, specifically highly personal information – genomic data is uniquely identifying – there are controls in place limiting who can access the data. These controls are administered by a variety of committees, groups or individuals, depending on the country and context. This can make the process of accessing data a complex and convoluted process, especially when researchers are seeking data from multiple countries. The free flow of data (within appropriate social and legal confines) is of benefit to the advancement of scientific and medical discoveries. The governance of GDS as it presently stands does not necessarily facilitate this. I will specifically be examining the roles of Research Ethics Committees, Data Access Committees and Technology Transfer Offices, and Data Monitoring Committees, first, to generally promote transparency with respect to their functioning, something which is currently lacking in the literature, and secondly, to assess whether there is any duplication in the assessments they make when approving or declining data access requests. If evidence for duplication becomes apparent, this will assist in the development of potential solutions for streamlining the data access process to remove redundancies and inconsistencies.
- Green, Stephanie. 'The European Union and action on climate change, through the lens of the wine industry.' Wine Economics and Policy 7.2 (2018): 120-127
- Green, Stephanie. 'A Critical Reading of the Declaration on the Rights of Indigenous Peoples.' Indigenous Policy Journal 29.3 (2019).