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.

Clogged Spaces

Clogged Spaces involves an exploration of areas of regulatory congestion.

Regulatory congestion has grown rapidly as a rule-based approach that is largely uninformed about the workings and trajectories of modern life sciences. It has tended to operate in a compartmentalised fashion focusing on particular objects of regulatory concern such as tissue or data leading to stand-alone frameworks around those objects, rather than a broader perspective that views biomedical research trajectories holistically

This space will address the following research questions:

  • What lessons can be learned about proportionality in health research regulation, drawing in particular on experiences in the data and tissue spheres, and on the ways in which law deploys this concept in legal disputes?
  • What are the tacit dimensions of HRR such as influences from professional behaviours, attitudes, relationships and environments that are missed by fixing the regulatory object?