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Regulatory and Ethical Challenges in Moving Health Data: Same-same, but Different

Tamra Lysaght, a member of the steering committee, presented on the topic "Regulatory and Ethical Challenges in Moving Health Data: Same-same, but Different" at the Australasian Association of Bioethics and Health Law on 19-22 November 2023. As large-scale, data-intensive research and health programmes were implemented and expanded across institutions and jurisdictional boundaries, challenges emerged in moving datasets according to relevant laws and ethical standards. Some of these issues were related to actual legal barriers that prevented data from being stored and transferred without explicit consent from data subjects. Others were more appropriately characterised as perceived barriers that became entrenched in institutional policies and procedures, thus evolving into real obstacles. These challenges underscored the difficulty of balancing the social value of publicly-funded research and digital health innovations against the imperative to protect subjects from data security breaches. Such challenges were not unique to any particular type of health data context; instead, they manifested similarly across various research and health programmes where large datasets were collected, curated, stored and moved. This panel discussion featured five speakers from diverse data research contexts (including the recently concluded LINEAGE project on ethical governance of genomic data) and career stages, sharing their insights on these challenges. The session concluded with a facilitated Q&A, allowing the audience and panel to discuss potential solutions.