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

HeLEX symposium on health data and the limits of the law: Adaptive governance: flexibility to counteract limits of traditional health data governance? (957)

Tess Whitton 1
  1. University of Melbourne, Parkville, VIC, Australia

Technological advances are driving increased data collection and use. New and increasing applications of data are exposing the limits of traditional approaches to law. Examples include the unknowns surrounding new uses of health data in the context of My Health Record, and the way current frameworks tend to support an individualistic notion of data rights. Governance and particularly law, provides stability and consistency but in highly innovative spaces increasing ability to support flexibility is required.

There is reason to reconsider how we might govern in conditions of high uncertainty. Health data is sensitive. And how best to govern where there are conflicting ethical, moral and social issues is continual balancing act. Ethical, legal and social issues (ELSI) research is a well-known way that one might consider the issues which arise in respect of any innovation. Further, a new, and influential approach to health governance is responsible research and innovation. But these approaches provide little guidance as to how to translate this into practice. Flexible governance approaches contribute to answering whether governance can support these goals.

In this paper, I consider how adaptive governance might provide tools to navigate uncertainty. I argue that any efficient governance approach in this area, should be consistent with high level health governance approaches. Further, it must support processes facilitating flexibility to support technological innovation and human responses to it over time. I also consider the extent to which this approach may provide a means to address legal limitations.