Training on citizen engagement in Policy-relevant Science, Technology and Innovation: Sarajevo 12 -13 October 2017. @ Rektorat, Univerzitet u Sarajevu, Obala Kulina Bana 7/II, 71000 Sarajevo, BiH

In the framework of its Enlargement and Integration Action, JRC is organizing in collaboration with the Ministry of Civil Affairs of Bosnia and Herzegovina this "Training on citizen engagement in Policy relevant Science, Technology and Innovation", in Sarajevo on 12th-13th October 2017. Creating the conditions for genuine engagement of citizens and other societal actors in matters of their concern where science and technology are relevant is an issue of increasing political attention; not least because the diffusion of “low cost” and “low tech” media through which citizens can, like never before, express opinions and concerns calls for institutional reflexivity. Public engagement is one of the pillars of the RRI lemma, together with Ethics. This training course responds to a concrete lack of genuine and legitimate places whereby institutions can explore insights, expectations and imaginaries of citizens in matters of concern to all. This training is concerned with the science for policy realm where engagement of citizens is needed and relevant to ensure quality of policy formulation processes in situations described in the framework of “post-normal science” where “facts uncertain, values in dispute, stakes high and decisions urgent". This training will look into participatory approaches to discuss science and technology developments as well as discuss what makes trustful relationships between the scientific community and the public trustworthyJRC.I.2-Foresight, Behavioural Insights and Design for Polic

Online information on face masks: analysis of websites in Italian and English returned by different search engines.

OBJECTIVE: Countries have major differences in the acceptance of face mask use for the prevention of COVID-19. This work aims at studying the information online in different countries in terms of information quality and content. DESIGN: Content analysis. METHOD: We analysed 450 webpages returned by searching the string 'are face masks dangerous' in Italy, the UK and the USA using three search engines (Bing, Duckduckgo and Google) in August 2020. The type of website and the stance about masks were assessed by two raters for each language and inter-rater agreement reported as Cohen's kappa. The text of the webpages was collected from the web using WebBootCaT and analysed using a corpus analysis software to identify issues mentioned. RESULTS: Most pages were news outlets, and few (2%-6%) from public health agencies. Webpages with a negative stance on masks were more frequent in Italian (28%) than English (19%). Google returned the highest number of mask-positive pages and Duckduckgo the lowest. Google also returned the lowest number of pages mentioning conspiracy theories and Duckduckgo the highest. Webpages in Italian scored lower than those in English in transparency (reporting authors, their credentials and backing the information with references). When issues about the use of face masks were analysed, mask effectiveness was the most discussed followed by hypercapnia (accumulation of carbon dioxide), contraindication in respiratory disease and hypoxia, with issues related to their contraindications in mental health conditions and disability mentioned by very few pages. CONCLUSIONS: This study suggests that: (1) public health agencies should increase their web presence in providing correct information on face masks; (2) search engines should improve the information quality criteria in their ranking; (3) the public should be more informed on issues related to the use of masks and disabilities, mental health and stigma arising for those people who cannot wear masks

Training on Citizen Engagement in Policy-relevant Science,Technology and Innovation

Creating the conditions for genuine engagement of citizens and other societal actors in matters of their concern where science and technology are relevant is an issue of increasing political attention; not least because the diffusion of “low cost” and “low tech” media through which citizens can, like never before, express opinions and concerns calls for institutional reflexivity. Public engagement is one of the pillars of the RRI lemma, together with Ethics. This training course responds to a concrete lack of genuine and legitimate places whereby institutions can explore insights, expectations and imaginaries of citizens in matters of concern to all. This training is concerned with the science for policy realm where engagement of citizens is needed and relevant to ensure quality of policy formulation processes in situations described in the framework of “post-normal science” where “facts uncertain, values in dispute, stakes high and decisions urgent". This training will look into participatory approaches to discuss science and technology developments as well as discuss what makes trustful relationships between the scientific community and the public trustworthy.JRC.I.2-Foresight, Behavioural Insights and Design for Polic

Time to teach post-normal science communication? Fostering the engagement of the extended peer community in an academic course of Environmental Sciences

In November 2016, within an Environmental studies course at the University of Venice, students carried out an experiment aimed at collecting scenarios of the Venetian coast’s future starting from lessons learnt during the episode of storm surge 50 years ago (Aqua Granda flood). The students built scenarios able to anticipate the effect of sea level rise on coastal areas in Venice, based not only on scientific input but also on a methodology called “Futurescape city Tours” (FCT) involving inhabitants of the barrier islands of Lido and Pellestrina. This paper will explore three main questions: (i) Can participatory and experiential methodologies, such as FCT help students behave in an anticipatory and inclusive way in their future professional activities? (ii) Can we talk about post-normal science teaching? — i.e. one that acknowledges and works with science and other knowledges to address societal issues? (iii) Can such an approach challenge students thinking in relation to knowledge hierarchies

Role of pitrm1 in mitochondrial dysfunction and neurodegeneration

Mounting evidence shows a link between mitochondrial dysfunction and neurodegenerative disorders, including Alzheimer Disease. Increased oxidative stress, defective mitodynamics, and impaired oxidative phosphorylation leading to decreased ATP production, can determine synaptic dysfunction, apoptosis, and neurodegeneration. Furthermore, mitochondrial proteostasis and the protease-mediated quality control system, carrying out degradation of potentially toxic peptides and misfolded or damaged proteins inside mitochondria, are emerging as potential pathogenetic mechanisms. The enzyme pitrilysin metallopeptidase 1 (PITRM1) is a key player in these processes; it is responsible for degrading mitochondrial targeting sequences that are cleaved off from the imported precursor proteins and for digesting a mitochondrial fraction of amyloid beta (Aβ). In this review, we present current evidence obtained from patients with PITRM1 mutations, as well as the different cellular and animal models of PITRM1 deficiency, which points toward PITRM1 as a possible driving factor of several neurodegenerative conditions. Finally, we point out the prospect of new diagnostic and therapeutic approaches.publishedVersio

Interrogating Privacy in the digital society: media narratives after 2 cases

The introduction of information technology (IT) in the society and its pervasiveness in every aspect of citizens’ daily life highlight societal stakes related to the goals of IT uses, social networks being a most important example. This paper examines two cases which have in common a not straightforward link with privacy as addressed and protected by existing law in Europe (EU) and the United-States (USA), but whose characteristics, we reckon fall on other privacy function and properties. In Western societies individuals rely on normative discourses such as the legal one in order to ensure protection. Hence, the paper argues that other functions of privacy need either further framing into legislation or they need to constitute in themselves normative commitments of an ethical nature for technology development and use. Some initiatives at EU level recall such commitments namely by developing a normative discourse based on ethics and human values. We argue that we need to interrogate society about those normative discourses because the values we once cherished in a non-digital society are seriously being questioned.JRC.G.7-Digital Citizen Securit

Clinical and Biochemical Features in a Patient With Mitochondrial Fission Factor Gene Alteration

Mitochondrial Fission Factor (MFF) is part of a protein complex that promotes mitochondria and peroxisome fission. Hitherto, only 5 patients have been reported harboring mutations in MFF, all of them with the clinical features of a very early onset Leigh-like encephalopathy. We report on an 11-year-old boy with epileptic encephalopathy. He presented with neurological regression, epileptic myoclonic seizures, severe intellectual disability, microcephaly, tetraparesis, optic atrophy, and ophthalmoplegia. Brain MRI pattern was compatible with Leigh syndrome. NGS-based analysis of a gene panel for mitochondrial disorders revealed a homozygous c.892C>T (p. Arg298*) in the MFF gene. Fluorescence staining detected abnormal morphology of mitochondria and peroxisomes in fibroblasts from the patient; a strong reduction in MFF protein levels and the presence of truncated forms were observed. No biochemical alterations denoting peroxisomal disorders were found. As reported in other disorders affecting the dynamics of intracellular organelles, our patient showed clinical features suggesting both mitochondrial and peroxisomal impairment. High levels of lactate in our case suggested an involvement of the energetic metabolism but without clear respiratory chain deficiency, while biomarkers of peroxisomal dysfunction were normal. We confirm that MFF mutations are associated with epileptic encephalopathy with Leigh-like MRI pattern

The constitution of the Hybrid World

The development and widespread use of information and communication technologies (ICT) are having a profound impact in many aspects of our daily lives, transforming the conditions and procedures of work, changing the modes of communication and social interaction, and altering the fundamental nature of human action, insofar as they play an important role in shaping what we do and how we experienced the world. In fact, the re-conceptualisation of the very foundational assumptions of modern societies, the new configurations of natural and social life, and the blurring of ontological categories upon which our political, social and legal orders are based, point to fundamental aspects of the human condition that have been reshaped by the hybridisation processes characterising modern human entanglements with emerging technologies. Despite the constitutional nature of these transformations, the basic rules that bind a state to its citizens have undergone small adjustments and accommodations. This not only shows how constitutional rights continue to be regarded as the most stable elements of national life, but also calls attention to the need of looking for the ways in which unwritten and emergent rules of constitutional dimension are being crafted. Where can we observe the new constitutional order that is emerging at the present moment? What fundamental aspects of human life are being transformed by the mediated role played by new ICT? What are the far-reaching ethical, legal and social implications of these transformations? In what way the most fundamental human rights and the most fundamental relations between states and citizens are being reframed in view of cross-cutting transformations in law and new ICT? In this report we propose to address these questions by focusing our analysis on complex forms of mediation and translation that emerge from the use of the Internet and other ICT-based network arrangements.JRC.G.6-Digital Citizen Securit

Novel NDUFA12 variants are associated with isolated complex I defect and variable clinical manifestation

Isolated biochemical deficiency of mitochondrial complex I is the most frequent signature among mitochondrial diseases and is associated with a wide variety of clinical symptoms. Leigh syndrome represents the most frequent neuroradiological finding in patients with complex I defect and more than 80 monogenic causes have been involved in the disease. In this report, we describe seven patients from four unrelated families harboring novel NDUFA12 variants, with six of them presenting with Leigh syndrome. Molecular genetic characterization was performed using next-generation sequencing combined with the Sanger method. Biochemical and protein studies were achieved by enzymatic activities, blue native gel electrophoresis, and western blot analysis. All patients displayed novel homozygous mutations in the NDUFA12 gene, leading to the virtual absence of the corresponding protein. Surprisingly, despite the fact that in none of the analyzed patients, NDUFA12 protein was detected, they present a different onset and clinical course of the disease. Our report expands the array of genetic alterations in NDUFA12 and underlines phenotype variability associated with NDUFA12 defect