Law, Sociology and Ethics in Data Governance for Genomics

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.

About Lineage

LINEAGE is developing a framework for ethical governance of genomic datasets in Australia.

LINEAGE is an ambitious 5-year study (2022-2027) that brings together bioethics scholars, legal academics, social scientists, clinical geneticists, genomic scientists, patients, First Nations Scholars and others.

Lineage Study AIMS

Aim 1

To delineate emerging ethical, legal and social issues arising from current governance of clinical and genomic datasets in Australia.

Aim 2

To establish an interdisciplinary stance to resolve ongoing ethical, legal and social issues in governance of clinical and genomic datasets.

Aim 3

To identify governance solutions for clinical and genomic datasets and develop these into a national governance framework.

Aim 4

To work in partnership with stakeholders to ensure that the framework is fit for purpose and feasible for implementation.

Who we are

The LINEAGE Study is examining law, sociology and ethics in data governance for genomics.

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.

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.

Investigator Team

Key links

The LINEAGE project is taking place within a complex ecosystem of existing research and regulation. Here are some links to key works that are informing our work.

Contact Us

The National Approach to Genomics Information Management

The NAGIM Blueprint (https://queenslandgenomics.org/national-approach-to-genomics-information-management/)
The NAGIM Implementation Plan (https://www.australiangenomics.org.au/projects/progress-the-implementation-of-the-nagim-blueprint/)

Reports

World Economic Forum. (2020) White Paper: Genomic Data Policy Framework and Ethical Tensions
(https://www3.weforum.org/docs/WEF_Genomic_Data_Policy_and_Ethics_Framework_pages_2020.pdf)

Key preliminary research

Lisa Eckstein, et al. (2018) Australia: regulating genomic data sharing to promote public trust. Hum Genet 137(8): 583-91. (https://pubmed.ncbi.nlm.nih.gov/30116956/)
Rebekah McWhirter, et al. (2021) Essentially Ours: Assessing the Regulation of the Collection and use of Health-Related Genomic Information. Centre for Law and Genetics Occasional Paper No 11. (https://www.utas.edu.au/__data/assets/pdf_file/0005/1576940/Essentially-Ours-CLG-OP11-1.pdf)
Minna Paltiel, et al. (2023) Protection of genomic data and the Australian Privacy Act: When are genomic data ‘personal information’?. International Data Privacy Law, doi:10.1093/idpl/ipad002 (https://academic.oup.com/idpl/advance-article-abstract/doi/10.1093/idpl/ipad002/7022049)