Silver Bullets Or Selling The Family Silver? Governance and Methodologies In Commercializing Health Big Data
Bruce Baer Arnold
Building: Holme Building
Room: Sutherland Room
Date: 2014-12-08 01:30 PM – 03:00 PM
Last modified: 2014-11-26
Abstract
Mining of health big data – on a whole of population scale – is being promoted as a transformative development in medical research, enabling the identification and thence treatment or prevention of disorders that have a genetic or lifestyle basis. Other benefits include identification of trends and patterns in healthcare consumption, allowing better targeting of resources and enabling more efficient healthcare planning by governments and private sector organisations, ultimately leading to substantial efficiencies. Controversy regarding the UK care.data initiative, sale of bulk data by the UK National Health Service to actuaries and pharmaceutical researchers, global collection of genetic data by direct-to-consumer enterprises such as 23andme and DECODE, and the Google health data initiative announced mid-2014 raise fundamental questions about research methodologies and governance. The paper considers privacy, ethics supervision, gatekeeping by journal editors, patient consent and transparency, and the valuation of data that is sold by public/private sector data collectors and repository managers. The authors suggest that because health data often has an intergenerational aspect there is a need to look beyond concerns regarding potential genetic or other discrimination and beyond claims that researchers have gained access to very large data sets too cheaply, ie an assumption that the only substantive concern with commercialisation is that the family silver was sold too cheaply. The paper argues instead that the Australian government and research institutions, along with their overseas peers, need to be wary of an ethic in which forecast research outcomes – silver bullets for a range of ills – override substantive concerns regarding human dignity, research quality and institutional accountability. In the age of big data and genomics Kant’s categorical imperative is more important than ever and health data analytics must be situated within institutional and statutory frameworks at both national and international levels. The authors foreshadow developments in law and in guidelines by entities such as the OECD that will shape those research methodologies.