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
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.
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 project.
Global Guidelines
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World Health Organization. (2024). Guidance for human genome data collection, access, use and sharing (https://www.who.int/publications/i/item/9789240102149). LINEAGE CIA Prof Ainsley Newson assisted with the drafting of this Guidance.
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Global Alliance for Genomics and Health. (2019) Framework for responsible sharing of genomic and health-related data. (https://www.ga4gh.org/framework/)
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Organisation for Economic Co-Operation and Development (2009). OECD Guidelines on Human Biobanks and Genetic Research Databases. (https://legalinstruments.oecd.org/en/instruments/OECD-LEGAL-0375 )
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 project outputs
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Lysaght, T., Ankeny, R., Brown, A. McWhirter, R., Nicol, D., Otlowski, M., Richards, B., Newson, A.J. The Australian LINEAGE Study: advancing and implementing international guidance on genomic data within local governance frameworks. npj Genom. Med. 10, 34 (2025). https://doi.org/10.1038/s41525-025-00492-6
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Cannizzo, F., Vidgen, M.E., McWhirter, R. , Petersen, A., Otlowski, M., Rizzi, M., Hensley, J., Newson, A.J. Opportunities for a national genomic data governance framework in Australia: a systematic review. BMC Med Ethics 26, 111 (2025). https://doi.org/10.1186/s12910-025-01273-7
- For a full list of LINEAGE publications, reports and presentations published to date, click here.
LINEAGE STUDY PARTNERS
