Ms Carolyn Adams1, Dr Felicity Flack2
1Macquarie University, 2Population Health Research Network
Access to population-wide data collections — such as the Medicare data collection, hospital admission and discharge records, and birth and death registers — is essential to support public health research and to promote evidence-based policy development. These administrative data collections provide inclusive, representative, and cost-effective resources for research. Linking these data collections is the future of public health research.
Many decisions are necessary to unlock access to this rich, but highly sensitive, data for research: decisions by legislators; policy makers; human research ethics committees and data custodians. These decisions are made every day but are they well supported by strong foundations in research ethics, human rights, and the law? This presentation will critique existing decision-making processes, demonstrating that the existing frameworks do not canvass the full range of values, interests, and rights at stake in the data linkage environment. What are the missing values, interests, and rights? How might they be better recognised and addressed?
Based on our recently published book [Carolyn Adams, Judy Allen, and Felicity Flack, Sharing Linked Data for Health Research: Towards Better Decision-Making (Cambridge Bioethics and Law Series, 2022)] this presentation will canvas the ethical, legal, and human rights foundations of making decisions on behalf of the community to share personal information without consent for health research. Our goal is to ensure that research using linked administrative data develops on sound ethical, rights-based, and legal foundations and to develop and present practical solutions to the problems faced by stakeholders in the complex and evolving environment.
Biography:
Carolyn Adams is a Senior Lecturer at Macquarie Law School where she teaches and researches in public law, focusing on human rights, health law, and open government. Carolyn is currently engaged in a major project examining the ethics, law, and policy of sharing data collections of personal information for research.
Dr Felicity Flack is the Manager, Policy and Client Services for Australia’s national data linkage infrastructure, the Population Health Research Network. She has extensive experience in the development, coordination, and operation of national data linkage systems particularly the navigation of cross-Jurisdictional legislative, policy and ethical issues.