Midata.coop And The Transactional Legalities Of Precision Medicine

• In Event: Personhood, Law, and Relationality Amidst the New Biosciences I

Abstract

The informational turn in the biosciences has brought forth extraordinary rhetoric about the capacity of digital devices to govern the health of individuals and populations. Cloud computing, smart watches, and tiny genomic screening machines will allow us to monitor and control chronic conditions, modulate the immune system against a range of disease and isolate abnormal genes, preventing death or illness. This paper examines how critics of this umbrella of approaches known as ‘precision medicine’ have responded to such rhetoric with concerns over the ownership of health and -omic data. Such critics have instead proposed collective ownership over health data as an antidote to the ‘digital feudalism’ of Google, Apple and Microsoft. This paper offers reflections on my experience developing the Midata cooperative model in conjunction with several such critics based in Switzerland. I discuss how I am attempting to translate the model to Australia through action research, and reflect upon the implicit subjects of precision medicine – individual, population, corporation and regulator. I reflect upon how the cooperative legal form offers critical perspectives on each of these subjects. I situate data cooperatives in a range of strategies to politicize the infrastructure of precision medicine.

Authors

• Declan Liam Kuch, UNSW

• Georgia Miller, UNSW

• Matthew Kearnes, Environmental Humanities Progarmme, School of Humanities and Languages, University of New South Wale