Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

The New Frontier of Health Data Governance     (1029)

Jane Kaye 1 2
  1. HeLEX, Faculty of Law, University of Oxford, Oxford, Oxon, UK
  2. University of Melbourne, Carlton, VICTORIA, Australia

There is a growing interest from governments around the world and institutions in both the public and private spheres, to derive benefits from the access and use of health data. Much of this data is routinely collected by patients and healthcare professionals in clinical and diagnostic settings; or through self-monitoring mobile applications offered by global companies such as Google, Apple and Samsung; as well as self-reported data provided through social media sites that allow citizens to post and compare details about their health condition. International research consortia also collect and share genomics and other clinical data for different purposes across borders, and research platforms allow these to be accessed by researchers across the globe. These aggregated datasets hold an immense wealth of information which can be unlocked with AI and machine learning technologies, so that some commentators have referred to health data as the “new oil”.  However, we have seen social media corporations harvest data collected by millions of individuals, to generate revenues in multiple ways, that are not directed at public benefit.

The purpose of this paper is to critically explore some of the new models of governance that are being proposed for data infrastructure: such as the idea of the Medical Information Commons, the self-regulation model proposed by Google, facebook and Amazon, and individual data dividends. How do we maximise the monetary and technological benefits for individuals and the wider society, without inadvertently increasing health inequalities and unduly profiting private companies?