Ownership of individual-level health data, data sharing, and data governance.
Jan PiaseckiPhaik Yeong CheahPublished in: BMC medical ethics (2022)
Undifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society.