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

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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.

Fletcher Presents on History of Obesity

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Isabel Fletcher presented on the history of obesity to the Edinburgh International Conference of Medicine. Her presentation focused on explaining why, despite being recognised since antiquity, obesity is best considered as a modern phenomenon. Fletcher described the ways in which contemporary knowledge about the extent, and negative effect on health, of excess bodyweight (obesity and overweight) derive from American and British research into the causes of coronary heart disease, and continued by outlining the development the body mass index (BMI) to both define and measure rates of obesity, and how this information was used to map its increasing prevalence.

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Patient Death and Face Transplantation

Current Anthropology

Samuel Taylor-Alexander had an article published in the leading disciplinary journal Current Anthropology. The article, entitled “Unmaking Responsibility: Patient Death and Face Transplantation”, demonstrates how the two components of responsibility—imputation and accountability—are decoupled in reports of patient death in the field.

In particular, Taylor-Alexander argues that responsibility is a product forged at the meeting of diverse social and technoscientific components and is something that is open to being remade and unmade.

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Irish Health Research Board Report Endorses Mason Institute Work

Proposals for an Enabling Data Environment for Health and Related Research in Ireland

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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AllegraLab Article: Liminality, Biomedicine, and the Law – A Symposium Supported by the Wellcome Trust

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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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Liminal Spaces Team Holds Symposium on Health Research Regulation and Liminality

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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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Welcome to Samuel Taylor-Alexander and Edward Dove

Image of Samuel Taylor-Alexander and Edward Dove

We are pleased to welcome on-board Dr Samuel Taylor-Alexander as Senior Research Fellow in Medical Anthropology and Edward (Ted) Dove as the Liminal Spaces PhD candidate.

Sam is conducting a study called “Regulation in Action: Doing and Experiencing Rare Diseases in the UK” in which he examines how health research policy influences quotidian experiences and decision making in domestic, clinical, and laboratory settings. In highlighting the spaces where regulation works, he aims to bring into relief the gaps and fissures between policy aims and policy function, allowing for a broader examination of regulatory function and a reassessment of current approaches to research governance.

For his PhD on the Liminal Spaces project, Ted will trace consent as a regulatory artefact in the assemblage of biomedical research expertise, and think through the ways in which we can move beyond the arguably narrow paradigm and clogged regulatory spaces in which consent operates.
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Ganguli Mitra and McMillan Join Liminal Spaces

Image of Agomoni Ganguli-Mitra and Catriona McMillan

Prof Graeme Laurie’s Wellcome Trust Liminal Spaces Project officially began in October 2015. The project brings together a team of anthropologists, sociologists, ethicists and lawyers with a range of stakeholders and regulators to examine the liminal spaces of the regulatory landscape.

The Mason Institute is pleased to welcome on-board the projects first research fellows – Ms Catriona McMillan and Dr Agomoni Ganguli Mitra. We’ve invited them to tell us a little bit about themselves.
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Laurie Launches Liminal Spaces Project

Lecture Theatre at University of Edinburgh

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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