Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold?
ConclusionA strong political will is essential for personalized medicine to be implemented efficiently in France and Quebec. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - August 1, 2018 Category: Medical Ethics Source Type: research

Who are the users of synthetic DNA? Using metaphors to activate microorganisms at the center of synthetic biology
AbstractSynthetic biology, a multidisciplinary field involving designing and building with DNA, often designs and builds in microorganisms. The role of these microorganisms tends to be understood through metaphors making the microbial cell like a machine and emphasizing its passivity: cells are described as platforms, chassis, and computers. Here, I point to the efficacy of such metaphors in enacting the microorganism as a particular kind of (non-)participant in the research process, and I suggest the utility of employing metaphors that make microorganisms a different kind of thing —active participants, contributors, and...
Source: Life Sciences, Society and Policy - July 14, 2018 Category: Medical Ethics Source Type: research

Disease surveillance data sharing for public health: the next ethical frontiers
AbstractIn the recent years, we have been witnessing a digital revolution in public and global health creating unprecedented opportunities for epidemic intelligence and public health emergencies. However, these opportunities created a double edge sword as access to data, quality monitoring and assurance, as well as governance and regulation frameworks for data privacy are lagging behind technological achievements.In this paper we identify three ethical challenges: sharing data across various early warning tools to support risk assessment. Secondly, define the challenges to be addressed by the legal frameworks for public he...
Source: Life Sciences, Society and Policy - July 4, 2018 Category: Medical Ethics Source Type: research

Synthetic biology in the German press: how implications of metaphors shape representations of morality and responsibility
AbstractSynthetic biology (SynBio) represents a relatively young field of research which has developed into an important scientific endeavour. Characterised by a high degree of interdisciplinary work crossing disciplinary boundaries, such as biology, mathematics and engineering, SynBio has been, since its beginning, devoted to creating new biological functions, metabolic pathways or even minimal organisms. Although its often-articulated aim of developing new forms of life has so far not been archived, SynBio nowadays represents a well-established biotechnological approach and it has also attracted public concern, especiall...
Source: Life Sciences, Society and Policy - June 24, 2018 Category: Medical Ethics Source Type: research

Individuals on alert: digital epidemiology and the individualization of surveillance
This article examines how digital epidemiology and eHealth coalesce into a powerful health surveillance system that fundamentally changes present notions of body and health. In the age of Big Data and Quantified Self, the conceptual and practical distinctions between individual and population body, personal and public health, surveillance and health care are diminishing. Expanding on Armstrong ’s concept of “surveillance medicine” to “quantified self medicine” and drawing on my own research on the symbolic power of statistical constructs in medical encounters, this article explores the impact of digital health su...
Source: Life Sciences, Society and Policy - June 14, 2018 Category: Medical Ethics Source Type: research

Machine metaphors and ethics in synthetic biology
AbstractThe extent to which machine metaphors are used in synthetic biology is striking. These metaphors contain a specific perspective on organisms as well as on scientific and technological progress. Expressions such as “genetically engineered machine”, “genetic circuit”, and “platform organism”, taken from the realms of electronic engineering, car manufacturing, and information technology, highlight specific aspects of the functioning of living beings while at the same time hiding others, such as evolu tionary change and interdependencies in ecosystems. Since these latter aspects are relevant for, for exampl...
Source: Life Sciences, Society and Policy - June 4, 2018 Category: Medical Ethics Source Type: research

The biogenetical revolution of the Council of Europe - twenty years of the Convention on Human Rights and Biomedicine (Oviedo Convention)
AbstractThe Council of Europe ’s legal regulation concerning development of biology and medicine undoubtedly form the most interesting, but certainly not perfect, over-national system of protection of human beings in prenatal stages of development. The strength of the mentioned system is that it based on well-known and common acceptable values and rules such as human dignity and its protection. The aim of the paper is to present the reasons behind adopting such a system, as well as the consequences of the latter.The author argues that in such a way a revolution within the human rights system of the Council of Europe took...
Source: Life Sciences, Society and Policy - May 16, 2018 Category: Medical Ethics Source Type: research

Scientific iconoclasm and active imagination: synthetic cells as techno-scientific mandalas
AbstractMetaphors allow us to come to terms with abstract and complex information, by comparing it to something which is structured, familiar and concrete. Although modern science is “iconoclastic”, as Gaston Bachelard phrases it (i.e. bent on replacing living entities by symbolic data: e.g. biochemical and mathematical symbols and codes), scientists are at the same time prolific producers of metaphoric images themselves. Synthetic biology is an outstanding example of a tech noscientific discourse replete with metaphors, including textual metaphors such as the “Morse code” of life, the “barcode” of life and the...
Source: Life Sciences, Society and Policy - May 14, 2018 Category: Medical Ethics Source Type: research