Centre for Law and Genetics

Genomic Data Sharing – Issues in Law, Research Ethics and Society

Project Lead

CLG Collaborators

Funding Source: Australian Research Council Grant, Discovery Project  $614,454

Project Duration: 2018-2023 (with extensions)

Project Status: Current

Project Summary

CLG researchers Nicol, Otlowski, Eckstein, Nielsen and Chalmers  are CIs on the ARC project ‘Genomic Data Sharing: Issues in Law, Research Ethics and Society.’ The focus of this project has been to examine the legal, ethical and social implications of genomic data sharing (GDS) which has become an essential component of clinical and research practice. This has involved CLG members working on issues associated with privacy, research ethics, consent, intellectual property rights and formalised transfers of data and materials in the context of genomic data flows between laboratories, regions, countries and sectors. This analysis is guided by a set of representative data sharing scenarios, and their associated issues, which are based on interviews with a number of practitioners involved in genomic data sharing across a range of areas. We also created a dataset of international genomic data sharing consortia and are using this dataset to examine governance arrangements, with particular focus on access.