Centre for Law and Genetics
Genomic Data Sharing – Issues in Law, Research Ethics and Society
- Professor Dianne Nicol
- Professor Don Chalmers
- Professor Margaret Otlowski
- Associate Professor Christine Critchley
- Dr Jane Nielsen
- Dr Lisa Eckstein
- Dr Rebekah McWhirter
Funding Source: ARC Discovery Grant
Commencement date: 2018
Project Status: Current
The rapid innovation in genomic technology, combined with the dramatic decline in the cost of sequencing data, has resulted in massive amounts of genomic data being generated. Genomic data sharing (GDS) is becoming an essential component of clinical and research practice. For example, precision medicine offering treatments targeted to the individual patient’s genetic characteristics can and has been evidenced to improve clinical care. Globally, legal and quasi-legal requirements may constrain free and open GDS. However, these requirements might also provide the assurances necessary to protect donors, encourage research and innovation, and promote ongoing public trust in GDS activities.
The team is currently working on an ARC Grant project, with the aim of developing and applying specific GDS scenarios in order to map the facilitators and barriers to globalised GDS.
The team hopes to assess the role that these legal and quasi-legal facilitators and barriers play in promoting trust in order to develop representative scenarios. These scenarios will be used to provide guidance on best practice GDS regulatory and governance strategies.