Debating Health Data Norms in Times of Institutional Fragmentation – A Discourse Network Analysis of Norm Contestation within Global Health Organisations

Despite the overwhelming interest in transnational sharing of health data – i.e. for the purpose of pandemic surveillance – contemporary international norms on the regulation are severely underdeveloped/contested. As we will explore in this paper, there are multiple challenges at the local, national, and international levels that impede the process of harmonizing international rules on the sharing of health data, the establishment of joint health data systems, as well as the evaluation of health policies across international organisations and national jurisdictions. This finding sits squarely with a strong international consensus that surveillance and the traceability of data have become valuable tools for preventive medicine and global health governance at large. In this paper, we ask: when and how have international health institutions responded to the ever-accelerating global circulation, commodification, and sharing of human data? Which actors and actor networks have emerged as linchpins in these debates over the past two decades? And, most importantly, why the structure of networks and the incompatibility of policy frames circulating in the debate may explain the current “impasse” in the legalization of health data sharing norms. By tracing the emergence, evolution, and diffusion of policy frameworks using the innovative methodology of Discourse Network Analysis, we seek to highlight the trajectory of emerging debates on the rules and norms that regulate and have regulated the transnational circulation, sharing, and commodification of data surrounding the human body (for example insurance numbers, medical records, and even genetic information). Our analysis highlights that the multiplication of actors within global health governance in recent years has led to a fragmentation of discourse networks that result not only in a growingly complex health data regime (with soft rules emerging primarily on the initiative of the private sector) and, more importantly, in a collision of fundamental norms such as, most prominently, norms on privacy and data ownership on the one hand and liberal data access/use norms on the other. The increasing influence of non-state private actors vis-à-vis state actors and international institutions, in particular, has resulted in a shift in the structure of policy and advocacy networks ("advocacy network constellations") and the emergence of new frames that are increasingly contesting the protection of personal rights (especially of privacy rights) in favour of a more liberal use of health data. Concurrently, we argue that in recent years the normative environment of health data sharing is characterised by an intensifying contestation of established norms and non-compliance with international health data norms due to the formation of new discourse coalitions challenging well-established health care coalitions – in particular those led by international organisations. Our analysis is based on more than 9,000 journal articles, documents published by international organisations (IO; including the United Nations, the World Health Organisation, and the Organisation for Economic Co-operation and Development), and parliamentary debates from Germany, Austria, and the United Kingdom as well as qualitative interviews with IO experts.