LINEAGE: Law, Sociology and Ethics in Data Governance for Genomics

Project Details

The LINEAGE Study is a research collaboration drawing on the expertise of leading scholars and an interdisciplinary team to address emerging ethical, legal and social issues in governance of clinical genomic datasets and improve health.

Rapid advances in genetic sequencing technologies are enabling large collections of genetic information – ‘genomic datasets’ – to be set up and used to benefit human health.

We have come together to help Australia advance its genomics capability for human health, by ensuring the way that information from genetic and genomic sequencing is obtained, stored, used, shared and disposed of is appropriate.

Researchers

Professor Louise Keogh

Dr Bronwen Merner

Ms Alice Kim

Collaborators

Refer to the LINEAGE Study website - https://lineagestudy.org.au/

Funding

The “Ethical governance for clinical and genomic data” project, now known as LINEAGE: Law, Sociology and Ethics in Data Governance for Genomics, is funded by the Commonwealth of Australia, Medical Research Future Fund, 2021 Genomics Health Futures Mission Grant, grant ID: MRF2015531.

Research Outcomes

Protocol registration: https://osf.io/x6sc5