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.
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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An article led by Edinburgh Law School and Liminal Spaces PhD candidate Edward Dove has been published in the world-renowned journal Science.
The article, which is a ‘Policy Forum’ covering a science-relevant topic from a policy perspective, discusses key lessons learned from five data-intensive multi-jurisdictional research projects, of which several of the co-authors were personally involved.
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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?
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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.
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On the 40th anniversary of the inaugural lecture of Professor JK Mason, delivered in the University of Edinburgh on 28th February 1974, Professor Graeme Laurie, Chair of Medical Jurisprudence, gave a lecture entitled “Confronting the Liminal Spaces of Health Research Regulation”.
The launch of this annual series coincided with the launch of a major new project on this topic, led by Professor Laurie, and funded by the Wellcome Trust.
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