Our article on Navigating Familial Genetic Risks is now available here at the Journal of Medical Ethics.
We would like to thank all who took part in our Liminal Spaces symposium on duties of care and genetic/genomic information!
Katy McMillan’s most recent blog with Journal of Medical Ethics ‘Alexa, does this look infected? – We need to talk about safely regulating the digitisation of healthcare, now.’ Read it here:
Alexa, does this look infected? – We need to talk about safely regulating the digitisation of healthcare, now.
The results of our latest DELPHI study engaging stakeholders in health research regulation about possible reforms. There are some fascinating results about appeals to proportionality, public interest and the importance of co-production of regulation. The full open access article can be found here.
Should We Give Up Meat to Save the Planet?
Isabel Fletcher blogs a recap of ‘Should We All Give Up Eating Meat to Save the Planet?’, which was an event held recently in the Red Theatre at Summerhall as part of the Edinburgh International Science Festival (EISF) on the 6th April 2018. Join us over at The Motley Coat, to read more.
Our food systems are a major cause of environmental damage, linked to greenhouse gas emissions, loss of biodiversity and deforestation. Researchers and policymakers are encouraging us to adopt sustainable diets, but how do we make the right choices? And should we – as suggested by recently published guidelines in Sweden and the Netherlands – be reducing meat and dairy as these have the greatest environmental impact? Or should we be supporting our farmers because, in the UK, livestock production is such an important part of our economy? Join us for presentations and discussion.Ticket price includes samples of three sustainable snacks provided Edinburgh Larder.
This article analyses a hitherto largely obscured feature of regulatory environments in health research; namely, the role of regulatory stewardship. Through examples drawn from research ethics committees, emerging technologies, and governance of research resources, it outlines the essential features of regulatory stewardship, and argues that this concept can demonstrate considerable added value for all parties in delivering and benefiting from efficient and effective navigation of regulatory landscapes. It offers an exposition of the normative principles and associated responsibilities of the concept. The extant invisibility of regulatory stewardship requires fuller recognition and better integration of the approach into the effective functioning of law and regulation in the health research context.
‘Charting regulatory stewardship in health research: Making the invisible visible?’
Graeme Laurie, Edward S. Dove, Isabel Fletcher, Agomoni Ganguli-Mitra, Catriona McMillan, Nayha Sethi, Annie Sorbie, (2018) In: Cambridge quarterly of healthcare ethics, Vol 27, pp 333-347
The Liminal Spaces Team ran its second workshop at the Wellcome Collection in London on 1-2nd February, 2018. The overarching theme of the two day gathering was ‘Regulating for Uncertainty’ and the Team brought together a range of participants in order to gain insights into how we seek to respond to the challenges of health research regulation, across a variety of settings during times of flux. Three core themes (activities, actors and things) were explored across five panel sessions. The preliminary panel considered Liminality as a theoretical concept, inviting us to reflect, throughout the remainder of the workshop, how the concept might be of value (or not!) in practice. Next, a session on Global Health Emergencies considered what lessons we might learn from research and response in disaster settings, which are notoriously sights of uncertainty. The session on Margins and Beings examined the ways in which law can attempt to categorise constantly evolving objects of regulation (such as embryos) and the potential implications of doing so. Next, we focussed on Research/Treatment/Innovation and the challenges which emerge given the increasing overlap between these activities. The final panel turned to identify what responsibilities might lie with regulators in attempting to guide various actors, activities and thing across liminal spaces. The workshop findings will inform the future work of the Liminal Spaces Project.
The workshop report can be found here.
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.
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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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