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’.
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.
AllegraLab Article: Liminality, Biomedicine, and the Law – A Symposium Supported by the Wellcome Trust
The Liminal Spaces team discuss their recent symposium on liminality and health research regulation in the United Kingdom with AllegraLab.
Liminality, Biomedicine, and the Law – A Symposium Supported by the Wellcome Trust
Biomedicine and the life sciences continue to rearrange the relationship between culture and biology, problematizing what it means to be a person, and introducing uncertainty and instability to individual and public life. When this occurs, law is often called upon in response. Is this the best option? Why do we always turn to law to deal with ethical tensions or uncertainty in technoscience?
In May 2015, the Liminal Spaces Project team held a one-day workshop to discuss health research regulation in the United Kingdom.
Biomedicine and the life sciences continue to rearrange the relationship between culture and biology, problematising what it means to be a person, and introducing uncertainty and instability to individual and public life. When this occurs in regulation, law is often called upon in response. Is this the best option? Could an anthropological concept developed to make sense of ritual, structure and agency help us to better understand the profound sociotechnical challenges that continue to redefine life in the age of biobanks, gene and stem cell therapy, and other novel medico-scientific domains? Liminality refers to a threshold state characterised by possibility, marginality and transformation. Early research into liminal states helped to better understand the relationship between structure and agency, drawing attention to the connection between transformation and a given society’s underlying organisation and values. As temporal and spatial spaces of change, liminal states are also the sites of and for reflection.
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?
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?
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: