Prof Mark Taylor1
1Melbourne Law School
We live in a world increasingly driven by the digital. Health data, and the information it yields, is used to group and to stratify and it is mined to connect different people with risk, vulnerability, and opportunity. In this paper I argue that there is an urgent need to rethink what is needed if health data governance is to be worth of public trust and enable only those uses of data that persons have reason to expect and accept to be appropriate.
I suggest that to secure a future of effective health data governance we must now reconsider our understanding of ‘personal data’, the requirements of privacy impact assessments, and our expectations of ‘fair’ collection, use and disclosure of health data. We need also to move beyond the rhetoric of participation and engagement in health data governance and progress the commitments to monitoring and evaluation contained in the OECD Recommendation on Health Data Governance.
A failure to re-orient our governance approach will leave us unable to protect our collective interests in data, and incapable of addressing current power and information asymmetries. Corrective action is required to preserve any reasonable expectation of privacy in our shared digital futures.
Biography:
Bio to come