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.

Liminal Spaces

The key goal of this research is to provide the first-ever integrated, interdisciplinary and cross- cutting analysis of health research regulation (HRR). The research confronts the gaps between documented law and research practice – i.e liminal regulatory spaces – and promotes an holistic approach thus far absent in HRR.

The liminal spaces framework suggests opportunity to move within and between spaces, but also exposes uncertainty and instability. When this occurs in regulation, law is often called upon. Crucially, this research challenges that response.

Four research strands will engage stakeholders to ask: what is happening in the liminal spaces of HRR; what lessons can be learned across sectors and jurisdictions; and how can we better exploit liminal regulatory spaces?

The four strands are:

Clogged Spaces

Empty Spaces

Transitional Spaces

Dangerous Spaces