Disambiguating the benefits and risks from public health data in the digital economy
Sarah Cheung
Abstract
This article focuses on key roles that the ill-defined concept of ‘public benefit’ plays in accessing the public health data held by the UK’s National Health Service. Using the concept of the ‘trade-off fallacy’, this article argues that current data access and governance structures, based on particular construals of public benefit in the context of public health data, largely negate the possibility of effective control by individuals over future uses of personal health data. This generates a health data version of the trade-off fallacy that enables widespread involvement of commercial actors in personal data, despite public concerns over commercial involvement in, and potential exploitation of, public health data. The article suggests that, despite ostensibly robust regulatory and governance structures, this publicly held data is potentially subject to similar logics of accumulation as seen elsewhere in the digital economy, highlighting the inadequacies of current data regulatory frameworks in the digital era.