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.
Latest article for Journal of Medical Ethics ‘Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives?’
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 blog with Journal of Medical Ethics ‘Alexa, does this look infected? – We need to talk about safely regulating the digitisation of healthcare, now.’
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:
Fletcher coordinates session during Edinburgh International Science Festival ‘Should We Give Up Meat to Save the Planet?’
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.
Liminal spaces colleagues publish latest article ‘Charting regulatory stewardship in health research: Making the invisible visible?’, Cambridge quarterly of healthcare ethics, Vol 27 (2018)
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
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.
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.
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.
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?