A University of Sydney bioethics project to investigate the ethical, legal and social implications of sharing genomics data has been funded by the MRFF Genomics Health Futures Mission.
Earlier this year, InGeNA provided a letter of support for a grant application entitled “Ethical governance for clinical and genomic data”.
The project is headed up by Ainsley Newson, Professor of Bioethics at the University of Sydney. The LINEAGE project will investigate the ethical, legal and social implications of sharing genomic data, including pathways to patient and public trust, identifying necessary legal and/or regulatory reforms, and developing a governance framework around genomic and associated medical data. This project aligns with InGeNA’s key strategic pillar of furthering the fair and ethical use of genomics data.
An early activity in the LINEAGE project is stakeholder engagement to articulate particular pain points in developing and sharing genomic data. If you would like to be kept informed about opportunities to participate, please email Ainsley.