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  • 1.
    Declich, Andrea
    Department of Biology, University of Rome Tor Vergata, Rome, Italy.
    Colizzi, Vittorio (Contributor)
    Department of Biology, University of Rome Tor Vergata, Rome, Italy.
    Montesano, Carla (Contributor)
    Department of Biology, University of Rome Tor Vergata, Rome, Italy.
    Minutolo, Antonella (Contributor)
    Department of Biology, University of Rome Tor Vergata, Rome, Italy.
    Potestà, Marina (Contributor)
    Department of Biology, University of Rome Tor Vergata, Rome, Italy.
    Caiati, Giovanni (Contributor)
    Laboratorio di Scienze della Cittadinanza, Rome, Italy.
    Colonnello, Claudia (Contributor)
    Laboratorio di Scienze della Cittadinanza, Rome, Italy.
    d'Andrea, Luciano (Contributor)
    Laboratorio di Scienze della Cittadinanza, Rome, Italy.
    Marta, Federico L. (Contributor)
    Laboratorio di Scienze della Cittadinanza, Rome, Italy.
    Alcantara, Luiz C Jr. (Contributor)
    Fundacao Oswaldo Cruz, Rio de Janeiro, Brazil.
    Buchan, Alistair (Contributor)
    Radcliffe Department of Medicine, University of Oxford, Oxford, United Kingdom.
    Buzan, Elena (Contributor)
    Department of Biodiversity, University of Primorska, Koper, Slovenia.
    Dam, Rinita (Contributor)
    Radcliffe Medical Department, University of Oxford, United Kingdom.
    Djilianov, Dimitar (Contributor)
    Agrobioinstitute, Agricultural Academy, Sofia, Bulgaria.
    Elster, Doris (Contributor)
    Faculty of Biology & Chemistry, University of Bremen, Bremen, Germany.
    Fernow, Josepine (Contributor)
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Giovanetti, Marta (Contributor)
    Fundacao Oswaldo Cruz, Rio de Janeiro, Brazil.
    Henderson, Lorna R (Contributor)
    Oxford University Hospitals National Health Service Foundation Trust, Oxford, United Kingdom.
    Kalpazidou Schmidt, Evanthia (Contributor)
    Danish Centre for Studies in Research and Research Policy, University of Aarhus, Aarhus, Denmark.
    Khouri, Fernanda (Contributor)
    Fundacao Oswaldo Cruz, Rio de Janeiro, Brazil.
    Kiparoglou, Vasiliki (Contributor)
    Oxford University Hospitals National Health Service Foundation Trust, Oxford, United Kingdom.
    Moyankova, Daniela (Contributor)
    Agrobioinstitute, Agricultural Academy, Sofia, Bulgaria.
    Ovseiko, Pavel (Contributor)
    Radcliffe Medical Department, University of Oxford, United Kingdom.
    Salvato, Maria (Contributor)
    University System of Maryland, Baltimore, MD, United States.
    Shah, Sarwar (Contributor)
    NHR Oxford Biomedical Research Centre, Oxford University, United Kingdom.
    Wium, Martha (Contributor)
    International Centre for Genetic Engineering and Biotechnology, Cape Town, South Africa.
    Zerbini, Luiz (Contributor)
    International Centre for Genetic Engineering and Biotechnology, Cape Town, South Africa.
    Bielwski, Krzysztof P (Contributor)
    Intercollegiate Faculty of Biotechnology, University of Gdańsk and Medical University of Gdańsk, Gdańsk, Poland.
    Raszczyk, Izabela (Contributor)
    Intercollegiate Faculty of Biotechnology, University of Gdańsk and Medical University of Gdańsk, Gdańsk, Poland.
    Barendziak, Tanja (Contributor)
    Faculty of Biology & Chemistry, University of Bremen, Bremen, Germany.
    Brikholz, Julia (Contributor)
    Faculty of Biology & Chemistry, University of Bremen, Bremen, Germany.
    Dziedzic, Marta (Contributor)
    Intercollegiate Faculty of Biotechnology, University of Gdańsk and Medical University of Gdańsk, Gdańsk, Poland.
    RRI implementation in bioscience organisations: Guidelines from the STARBIOS2 project2019Collection (editor) (Refereed)
    Abstract [en]

    The Guidelines are a tool to promote, within biosciences research organisations, a structural change (i.e., a durable transformation of a research organisation) that facilitates the practice of Responsible Research and Innovation (RRI). They are one of the outputs of the STARBIOS2 project.

    The Guidelines arise from the practical experience of implementing Action Plans carried by the research organisations involved in the STARBIOS2 project, from the mutual learning activity among the STARBIOS2 partners, also supported by a study and update of RRI issues.

    The Guidelines aim to help readers to formalize and trigger structural change aimed at introducing RRI-related practices that are appropriate to their own organisations. The  Guidelines are not a series of prescriptions, but an itinerary of reflection and self-interpretation that is addressed to different actors within the Biosciences, such as: researchers, research organisations managers and technical staff members, professionals within research-funding organisations, students and others. Although these Guidelines are not designed for their specific needs, they could be useful to science policymakers as well. In very general terms, the Guidelines’ readers are people who intend to promote RRI or to emphasize responsibility within the research activities in which they are engaged, or who are trying to collect resources for designing and implementing activities with this end.

    To support this itinerary of reflection and self-interpretation, the document provides:

    • A description of a general RRI Model for research organisations within the biosciences, that is a set of ideas, premises and “principles of action” that define the practice of RRI in Bioscience research organisations
    • Some practical guidance for designing interventions to promote RRI in research organisations in the Biosciences, putting into practice the RRI Model
    • A set of useful practices in implementing the structural change process.

    Information on particular STARBIOS2 cases and experiences, as well as materials, tools and sources, are also provided in the Appendix and in the Annex.

  • 2.
    Fernow, Josepine
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    de Miguel Beriain, Inigo
    Universidad del País Vasco.
    Brey, Philip
    University of Twente .
    Stahl, Berndt
    De Montfort University .
    Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European projects2019In: Orbit Journal, ISSN 2515-8562, Vol. 2019, no 1Article in journal (Other academic)
    Abstract [en]

    Policymakers struggle to assess the ethical, legal and human rights impacts of IT systems in research, industry, and at home. At the same time, research needs to be useful for industry, academia, and society to have impact on policy. Right now, three European projects: PANELFIT, SHERPA and SIENNA, are working together with stakeholders to improve ethical, human rights and legal frameworks for information and communication technologies (ICT), big data analytics, artificial intelligence (AI) and robotics. Stakeholder involvement is key, and the outputs will support the European Union’s vision of Responsible Research and Innovation (RRI), as a means to foster the design of inclusive research and innovation. Here, we provide a short introduction to the projects and outline plans for collaboration with the aim to maximise our joint policy impact.

  • 3.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Fernow, Josepine
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.

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