Journal article
Digital Mega-Studies as a New Research Paradigm: Governing the Health Research of the Future
Jessica Bell, Megan Prictor, Lauren Davenport, Lynda O'Brien, Melissa Wake
Journal of Empirical Research on Human Research Ethics | SAGE Publications | Published : 2021
Abstract
'Digital Mega-Studies' are entirely or extensively digitised, longitudinal, population-scale initiatives, collecting, storing, and making available individual-level research data of different types and from multiple sources, shaped by technological developments and unforeseeable risks over time. The Australian 'Gen V' project exemplifies this new research paradigm. In 2019, we undertook a multidisciplinary, multi-stakeholder process to map Digital Mega-Studies' key characteristics, legal and governance challenges and likely solutions. We conducted large and small group processes within a one-day symposium and directed online synthesis and group prioritisation over subsequent weeks. We presen..
View full abstractGrants
Awarded by Australian National Health & Medical Research Council (NHMRC)
Funding Acknowledgements
This project received support from Melbourne Law School through a Research Excellence Grant (2019). As GenV's Scientific Director, MW is the sponsor-investigator responsible for GenV's overall design and governance. Generation Victoria is supported by the Paul Ramsay Foundation, the Victorian Government, the Murdoch Children's Research Institute and the Royal Children's Hospital Foundation. Research at the Murdoch Children's Research Institute is supported by the Victorian Government's Operational Infrastructure Support Program. MW is supported by Australian National Health & Medical Research Council (NHMRC) Principal Research Fellowship 1160906).