Empty Spaces explore the grey, unregulated area of experimental therapies. Some areas of biomedical enquiry proceed in the spaces between existing areas of legal regulation. One
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.
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.
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.
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.
Liminal Spaces Senior Research Fellow, Isabel Fletcher took part in the Edinburgh Science Festival’s SciMart event. She spoke at the event on Sustainability: From Food Systems to Stovies and Back Again, with Christian Reynolds from the University of Aberdeen. The event brought together food producers, researchers and chefs to reveal the fascinating science behind some of the nation’s favourite foodstuffs.
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.
On 24 March 2016, the Liminal Spaces project’s PhD Candidate, Annie Sorbie, will present at an upcoming MI Lunch on Regulating healthcare professionals and the public interest – ‘Hello from the other side: tales from the tribunal.
Over the last 15 years Annie has prepared, prosecuted and advised upon hundreds of cases before the national regulatory tribunals, as well as in the civil courts. These cases concern the fitness to practise of a wide range of healthcare professionals, from pharmacists to chiropractors, and span conduct from clinical incompetence to dishonesty and sexual misconduct. Drawing on her experience, Annie will provide a lively and accessible insight into how the courts have approached the concept of the public interest in this context.
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.
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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