Governing Health Research from Within:  Empowering the Actors Who Occupy Regulatory Spaces – 26‐27 January 2017: Wellcome, London

In January, Liminal Spaces colleagues held a workshop ‘Governing Health Research from Within:  Empowering the Actors Who Occupy Regulatory Spaces’.

Workshop description:

The architecture of health research has vastly expanded over the past two decades. Today,research involves and crosses between genomic data, tissue, health and lifestyle data, metadata and social media, reaching far into the private spheres and interests of patients, research participants and the wider population. This creates many new regulatory objects requiring attention, and also blurs distinctions between traditional roles such as clinician/researcher, and patient/participant. These developments often result in a burgeoning of silo‐based regulatory spaces – focusing respectively
data/tissue/cells/trials/databases/internet – which are being occupied with an ever‐expanding population of new actors, far beyond the classic actors such as regulators and self‐selecting patient groups. This workshop sought to identify the dynamics affecting this expanding range of actors and the challenges that they face in navigating and influencing health research through regulation. It also sought to examine deep questions about how these actors can be empowered, together with traditional regulators, to co‐produce optimal governance and practices across the entire spectrum of human health research. In short, we aimed to begin reimagining health research regulation in terms of the human practices experiences that drive it, while developing methods to evaluate those
influences and their role in determining what counts as good governance.

The workshop report can be found here.

Irish Health Research Board Report Endorses Mason Institute Work

Research by the Mason Institute’s Graeme Laurie and Nayha Sethi conducted as part of work for the Scottish Health Informatics Programme (SHIP) and the Farr Institute on robust governance of data sharing practices has been widely endorsed and supported by a new report by the Irish Health Research Board (HRB). The new report outlines the infrastructure and services needed in Ireland to allow safe access, storing, sharing, and linking data for research.

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Dangerous Spaces

Dangerous Spaces engage regulatory hindrances that contribute to the notorious Valley of Death in commercial innovations.

Risk to the Wellcome Trust vision of achieving extraordinary improvements in human and animal health lies not only in actual and perceived regulatory impediment, but also in actual and perceived barriers to the realisation of public benefit. One such example is the prospect of profit, which can turn a promising space of enquiry into a dangerous space of commercial risk and public suspicion.

This spaces will address the following research questions:

  • How can public interest and public benefit be more effectively reflected in HRR?
  • What must be done to translate ideological commitment to openness and public benefit into the acceptable praxis of health research involving commercial interests?