Regulatory and ethical problems in moving health data around: Same story in different contexts
Tamra Lysaght1, Bernadette Richards2, James Scheibner3, Rebekah McWhirter4, Minna Paltiel5, Megan Prictor5, Wendy Lipworth6, Owen Schaefer1
National University Of Singapore 2, 3, 56 Macquarie University1National University Of Singapore 2University of Queensland 3Flinders University 4Deakin University 5University of Melbourne 6Macquarie University
Abstract
As large-scale data-intensive research and health programs are implemented and expand across institutions and jurisdictional boundaries, problems arise in moving datasets around according to relevant laws and ethical standards. Some of these problems relate to actual legal barriers that prevent data from being stored and transferred without explicit consent from data subjects. Others are more appropriately characterised as perceived barriers that become so entrenched in institutional policies and procedures that they become real barriers. These barriers demonstrate the difficulty of balancing the social value of publicly-funded research and digital health innovations against protecting subjects from data security breaches. These problems are not features of any particular type of health data context. Instead, they arise in similar ways across different kinds of research and health programs where large datasets are collected, curated, stored and moved around. This in-conversation panel will feature five rapid-fire presentations with speakers from diverse data research contexts (including the recently commenced LINEAGE project about ethical governance of genomic data) and career stages sharing their insights on the problems, followed by facilitated Q&A with the audience and panel to discuss potential solutions.
Co-Chairs:
Bernadette Richards (University of Queensland) and Tamra Lysaght (National University of Singapore/University of Sydney)
Speakers:
•James Scheibner (Flinders University)
•Rebekah McWhirter (Deakin University)
•Minna Paltiel (University of Melbourne)
•Megan Prictor (University of Melbourne)
•Wendy Lipworth (Macquarie University)
The format will be highly discursive with presentations being limited to 25 minutes (5×5 min rapid fires) and 30-60 minutes dedicated to discussion that the co-Chairs will facilitate.
Biography
•James Scheibner is a Lecturer at Flinders University and will be speaking about heuristics and technological strategies for enabling data transfer across international borders, particularly between Singapore and Switzerland
•Rebekah McWhirter is a Senior Lecturer at Deakin University and will be speaking about perceived regulatory barriers in sharing genome data.
•Minna Paltiel is a PhD student at the University of Melbourne and will be speaking about implications for privacy protection of international transfer of genomic data, particularly between Australia and Israel
•Megan Prictor is Senior Lecturer at the University of Melbourne and will be speaking about clinical genomic data in networked electronic medical records in Australia
•Wendy Lipworth is Professor at Macquarie University and will be speaking about empirical research on participating in global biobanks