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  • 1.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Neuroethics in Context: The Development of the Discipline in Argentina2018In: The Routledge Handbook of Neuroethics / [ed] Johnson S. Rommelfanger K, Routledge, 2018Chapter in book (Refereed)
    Abstract [en]

    At present, the impact of scientific research and the effects of neurotechnology on human beings not only as biological beings but also as moral beings is increasingly felt in medicine and the humanities. It is reasonable to think that the future will bring even more ways of knowing, modifying, healing, and possibly enhancing the brain thus challenging our intuitions about who we are and how we act - or should act. Neuroethics attempts to both offer a collective response to the ethical issues that rapidly developing science raises, and to find new answers to age-old philosophical questions. This discipline is not as established in Argentina as it is in the United States and some European nations, but the unique historic-cultural and academic landscape of Argentina suggests promises for neuroethics to deliver original results if/when this development occurs. Here, I  briefly explain some of the neuroethical concerns that attract more attention locally and I make explicit some of the salient topics and challenges shaping neuroethics in Argentina. 

  • 2.
    Lind, Anna-Sara
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    A new Swedish legal framework for handling alleged misconduct2017Other (Other (popular science, discussion, etc.))
  • 3. Racine, Eric
    et al.
    Dubljevic, Veljko
    Jox, Ralf J.
    Baertschi, Bernard
    Christensen, Julia F.
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Jotterand, Fabrice
    Kahane, Guy
    Muller, Sabine
    Can Neuroscience contribute to practical ethics?: A critical review and discussion of the methodological and translational challenges of the neuroscience of ethics2017In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 2017, no 31, 328-337 p., 5Article in journal (Refereed)
    Abstract [en]

    Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an "ethics of neuroscience" and a "neuroscience of ethics". However, questions surface as to whether a "neuroscience of ethics" is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. 

  • 4.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Riga Stradins University, Latvia.
    Country report: an overview of animal protection in Latvia2017In: Scritti su etica e legislazione medica e veterinaria / [ed] Il comitato scientifico del Progetto, Bari: Cacucci Editore , 2017, 149-158 p.Chapter in book (Other academic)
  • 5.
    Aarum Hansen, Heidi
    et al.
    Østfold University College.
    Björktomta, Siv-Britt
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Sociology.
    Svalastog, Anna Lydia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Digital society generates new challenges on Child Welfare Services2017In: Croatian Medical Journal, ISSN 0353-9504, E-ISSN 1332-8166, ISSN ISSN 0353-9504, Vol. 58, no feb, 80-83 p., 2017.58.80Article in journal (Refereed)
    Abstract [en]

    Digital society has created a new situation that challenges the present discourse on public services. Since it is only a recent phenomenon, digital society has not yet been in-cluded in the broader filed of social work education and practice. In the present text, we focus on casework with children. The examples described in the text are taken from Scandinavian experiences and reflect our background and practice in social work with children. However, we dare to say that the situation is more or less the same in the rest of Europe, as illustrated by the presented social work examples and references from wider European context.

  • 6.
    Middleton, Anna
    et al.
    Wellcome, Connecting Sci, Soc & Eth Res Grp, Genome Campus, Cambridge, England..
    Mendes, Alvaro
    Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Oporto, Portugal.;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, Ctr Predict & Prevent Genet CGPP, Oporto, Portugal..
    Benjamin, Caroline M.
    Univ Cent Lancashire, Sch Community Hlth & Midwifery, Preston, Lancs, England.;Liverpool Womens NHS Hosp Trust, Liverpool, Merseyside, England..
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Direct-to-consumer genetic testing: where and how does genetic counseling fit?2017In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828X, Vol. 14, no 3, 249-257 p.Article in journal (Refereed)
    Abstract [en]

    Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces.

  • 7.
    Budin-Ljosne, Isabelle
    et al.
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway..
    Teare, Harriet J. A.
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Kaye, Jane
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Beck, Stephan
    UCL, UCL Canc Inst, London, England..
    Bentzen, Heidi Beate
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.;Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway..
    Caenazzo, Luciana
    Univ Padua, Padua, Italy..
    Collett, Clive
    Hlth Res Author, London, England..
    D'Abramo, Flavio
    Free Univ Berlin, Focus Area DynAge, Berlin, Germany..
    Felzmann, Heike
    NUI Galway, Ctr Bioeth Res & Anal, Galway, Ireland..
    Finlay, Teresa
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Javaid, Muhammad Kassim
    Univ Oxford, Nuffield Dept Orthopaed Rheumatol & Musculoskelet, NIHR Musculoskeletal Biomed Res Unit, Oxford, England..
    Jones, Erica
    UCL, UCL Canc Inst, London, England..
    Katic, Visnja
    Univ Rijeka, Sch Med, Rijeka, Croatia..
    Simpson, Amy
    Genet Alliance UK, London, England..
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. EURAC, Ctr Biomed, Bolzano, Italy..
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research2017In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, 4Article in journal (Refereed)
    Abstract [en]

    Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

  • 8. Malmqvist, Erik
    et al.
    Furberg, Elisabeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sandman, Lars
    Ethical aspects of medical age assessment in the asylum process:a Swedish perspective2017In: International journal of legal medicine (Print), ISSN 0937-9827, E-ISSN 1437-1596Article in journal (Refereed)
    Abstract [en]

    According to European regulations and the legisla-tions of individual member states, children who seek asylumhave a different set of rights than adults in a similar position.To protect these rights and ensure rule of law, migration au-thorities are commonly required to assess the age of asylumseekers who lack reliable documentation, including throughvarious medical methods. However, many healthcare profes-sionals and other commentators consider medical age assess-ment to be ethically problematic. This paper presents a sim-plified and amended account of the main findings of a recentethical analysis of medical age assessment in the asylum pro-cess commissioned by the Swedish National Board of Healthand Welfare. A number of ethical challenges related to con-flicting goals, equality and fairness, autonomy and informedconsent, privacy and integrity, and professional values androles are identified and analysed. It is concluded that most ofthese challenges can be met, but that this requires a systemwhere the assessment is sufficiently accurate and where ade-quate safeguards are in place. Two important ethical questionsare found to warrant further analysis. The first is whetherasylum seekers’consent to the procedure can be consideredgenuinely voluntary. The second is whether and how medicalage assessments could affect negative public attitudes towardsasylum seekers or discriminatory societal views more generally.

  • 9. de Bekker-Grob, Esther
    et al.
    Berlin, Conny
    Levitan, Bennet
    Raza, Karim
    Christoforidi, Kalliopi
    Cleemput, Irina
    Pelouchova, Jana
    Enzmann, Harald
    Cook, Nigel
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project2017In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 10, no 3, 263-266 p.Article in journal (Refereed)
    The full text will be freely available from 2018-06-14 09:00
  • 10.
    Eriksson, Stefan
    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.
    Helgesson, Gert
    Karolinska Institutet.
    Hantering av oredlighet i forskning: Kan förväntningar på en ny modell uppfyllas?2017In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, 67-79 p.Article in journal (Refereed)
  • 11.
    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.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials2017In: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, no 10, 679-682 p.Article in journal (Refereed)
    Abstract [en]

    Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

  • 12.
    Slokenberga, Santa
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Merino Martinez, Roxana
    Karolinska institutet.
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Legal and ethical governance of intercontinental biobanking: Some experiences from a H2020 project2017In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, 169-192 p.Article in journal (Refereed)
    Abstract [en]

    Biobanks exist today on every continental though they have evolved differently in different parts of the world. The African States have been involved in biobank research for a considerable time but for decades large volumes of data and samples have been transferred outside the continent to developed countries for their storage and eventual further use, thus affecting the capacity-building and development for researchers in Africa. Currently, there are ongoing projects to build biobank research capacity within the regions where they are at an early developmental stage and collaborate transnationally in that regard. One of them is B3Africa, an EU-funded project that aims to facilitate collaboration between selected EU Member States and the African States and enhance mutual data and sample exchange between the EU and African States. Within the project, an informatics platform, the eB3Kit, is being developed. The platform integrates available open-source software, services and tools for biobanking and bioinformatics. Further, an ethical and legal framework for collaboration is being drafted that may bridge biobank research activities in the EU Member States and the African States. This article focuses on the latter, the ethical and legal framework.

  • 13. Piciocchi, Cinzia
    et al.
    Ducato, Rossana
    Martinelli, Lucia
    Perra, Silvia
    Tomasi, Marta
    Zuddas, Carla
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.2017In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article in journal (Refereed)
    Abstract [en]

    This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank's insolvency. To this end, it analyses two case studies: a controversial bankruptcy case which occurred in Sardinia, one of the first examples of private and public partnership biobanks. Another case study considered is the Chris project: an example of partnership between a research institute in Bolzano and the South Tyrolean Health System. Both cases seem to point in the same direction, suggesting expediency of promoting and improving public-private partnerships to manage biological tissues and biotrust to conciliate patent law and public interest.

  • 14. Kalokairinou, L
    et al.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Fisher, E
    Flatscher-Thöni, M
    Hartlev, M
    van Hellemondt, R
    Juškevičius, J
    Kapelenska-Pregowska, J
    Kováč, P
    Lovrečić, L
    Nys, H
    de Paor, A
    Phillips, A
    Prudil, L
    Rial-Sebbag, E
    Romeo Casabona, CM
    Sándor, J
    Schuster, A
    Soini, S
    Søvig, KH
    Stoffel, D
    Titma, T
    Trokanas, R
    Borry, P
    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape2017In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article, review/survey (Refereed)
    Abstract [en]

    Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights.

  • 15.
    Viberg, Jennifer
    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.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hösterey Ugander, Ulrika
    Clinical Genetics, Sahlgrenska University Hospital.
    Hansson, M G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet..
    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research2017In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134Article in journal (Refereed)
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

  • 16.
    Lipina, Sebastián
    et al.
    Unidad de Neurobiología Aplicada, Centro de Educación Médica e Investigaciones Clínicas “Norberto Quirno”-Consejo Nacional de Investigaciones Científicas y Técnicas, Buenos Aires, Argentina.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Neuroscience of Childhood Poverty: Evidence of Impacts and Mechanisms as Vehicles of Dialog With Ethics2017In: Frontiers in Psychology, ISSN 1664-1078, E-ISSN 1664-1078, Vol. 8, 61Article in journal (Refereed)
    Abstract [en]

    Several studies have identified associations between poverty and development of self-regulation during childhood, which is broadly defined as those skills involved in cognitive, emotional, and stress self-regulation. These skills are influenced by different individual and contextual factors at multiple levels of analysis (i.e., individual, family, social, and cultural). Available evidence suggests that the influences of those biological, psychosocial, and sociocultural factors on emotional and cognitive development can vary according to the type, number, accumulation of risks, and co-occurrence of adverse circumstances that are related to poverty, the time in which these factors exert their influences, and the individual susceptibility to them. Complementary, during the past three decades, several experimental interventions that were aimed at optimizing development of self-regulation of children who live in poverty have been designed, implemented, and evaluated. Their results suggest that it is possible to optimize different aspects of cognitive performance and that it would be possible to transfer some aspects of these gains to other cognitive domains and academic achievement.We suggest that it is an important task for ethics, notably but not exclusively neuroethics, to engage in this interdisciplinary research domain to contribute analyses of key concepts, arguments, and interpretations. The specific evidence that neuroscience brings to the analyses of poverty and its implications needs to be spelled out in detail and clarified conceptually, notably in terms of causes of and attitudes toward poverty, implications of poverty for brain development, and for the possibilities to reduce and reverse these effects.

  • 17.
    Wickström Östervall, Linnea
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nudging to prudence?: The effect of reminders on antibiotics prescriptions2017In: Journal of Economic Behavior and Organization, ISSN 0167-2681, E-ISSN 1879-1751, Vol. 135, 39-52 p.Article in journal (Refereed)
    Abstract [en]

    Antibiotic resistance is a large and growing global health threat with important consequences. Prudent use of antibiotics is vital to delay the spread of resistance. In this study I use a randomized controlled trial to test the effect on antibiotics use of reminders to primary care patients. The intervention was implemented across 31 clinics during the flu season in Stockholm. A two-level randomization was used, with randomization at clinic level as well as at individual patient level. With reminders antibiotics use fell by 12.6 per cent relative to the control clinics. The effect is at clinic level, suggesting that doctors or doctor patient interactions, not individual patients, are affected. Results from a follow-up experiment further suggest that an effect on the interactions between doctor and patient is the primary driver of the main results. Behavioural interventions targeting these interactions have the potential to reduce antibiotics use. More research is needed, though, as monitoring and adherence may also play a role.

  • 18.
    Holmstrom, Inger K.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. Malardalen Univ, Sch Hlth Care & Social Welf, Box 883, SE-72123 Vasteras, Sweden.
    Kaminsky, Elenor
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. Malardalen Univ, Sch Hlth Care & Social Welf, Box 883, SE-72123 Vasteras, Sweden.
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Univ Gavle, Fac Hlth & Occupat Studies, SE-80176 Gavle, Sweden..
    Nursing students' awareness of inequity in healthcare - An intersectional perspective2017In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 48, 134-139 p.Article in journal (Refereed)
    Abstract [en]

    Objective: The overall aim of the present study was to explore awareness of inequity in healthcare and the intersection between different structures of power among nursing students. Another aim was to delineate the knowledge and use of Swedish Healthcare Direct in this group.

    Design: The study had a descriptive design with a quantitative approach.

    Participants: The sample consisted of 157 nursing students from three universities in central Sweden.

    Methods: The students filled out a study specific questionnaire in class. The questionnaire consisted of short descriptions of twelve fictive persons who differed in gender, age, and ethnicity, with questions about their life situation. The mean was calculated for each assessed fictive person for every item. In the next step, the assessments were ranked from the lowest probability to the highest probability. A 'Good life-index' consisting of quality of life, power over own life, and experience of discrimination, was also calculated. Free text comments were analysed qualitatively.

    Results: People with Swedish names were assessed to have the highest probability of having a good life. Among those with Swedish names, the oldest woman was assessed as having the lowest probability of a good life. All students had knowledge about Swedish Healthcare Direct, but more female students had used the service compared to male students.

    Conclusions: The results indicate that the nursing students had awareness of how power and gender, ethnicity and age, are related. Based on the free text comments, the questions and the intersectional perspective seemed to evoke some irritation which points to their sensitive nature. Therefore, the questionnaire could be used as a tool to start a discussion of equity in healthcare and in interventions where the aim is to raise awareness of inequality and intersectionality.

  • 19.
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Oversight of EU medical data transfers: An administrative law perspective on cross-border biomedical research2017In: Health and Technology, ISSN 2190-7188, E-ISSN 2190-7196, 1-12 p.Article in journal (Refereed)
    Abstract [en]

    The notionof privacy has longhad a central rolein human rights law, not least in connection to health and medicine.International, regional and national bodies have enacted a number of binding and non-binding document for physicians and researchers to adhere to, in order to protect the autonomy, dignity and privacy of patients and research subjects. With the development of new technologies, the right to privacy has gained a new perspective; the right to protection of personal data with in information and communication technologies. The right to data protection has been attributed an increasing  importance within EU law. Accordingly, the use of health data in medical research in general and in biobankrelated medical research in particular, has made data protection law highly relevant. In medical research involving biobanks, transferring human biological samples and/or individual health data is taking place on a daily basis.These transfers involve several oversight bodies, institutional review boards (IRBs), research ethics committees, or even data protection authorities. This article investigates the role of these national oversight bodies in the transfer of health data in cross border research, from an EU law point of view. A special focus is laid on transfer of health data for research purposes from the EU to the US, in the light of the recently enacted EU US Privacy Shield.The main question posed is how American oversight bodies for medical research can be expected to handle the increasingly strict EU requirements for the processing of health data in medical research review.

  • 20.
    Falahee, Marie
    et al.
    Univ Birmingham, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Birmingham, W Midlands, England..
    Buckley, Christopher D.
    Univ Birmingham, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Hansson, M G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Stack, Rebecca J.
    Univ Birmingham, Birmingham, W Midlands, England.;Trent Univ, Nottingham, England..
    Raza, Karim
    Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation2017In: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 69, no 10, 1558-1565 p.Article in journal (Refereed)
    Abstract [en]

    Objective: To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives concerning risk and its modulation.

    Methods: Twenty-one RA patients took part in semistructured interviews.

    Results: Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of the relatives' perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions. Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on the quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies. Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualized as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.

    Conclusion: Information about risk factors for RA, and the potential impact of RA on the quality of life, is needed to support family communication about RA risk. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes.

  • 21.
    Svensson, Anna C.
    et al.
    Karolinska Inst, Dept Publ Hlth Sci, SE-17177 Stockholm, Sweden..
    Stjernschantz Forsberg, Joanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Stockholm Cty Council, Ctr Epidemiol & Community Med, Stockholm, Sweden..
    Seblova, Dominika
    Karolinska Inst, Dept Publ Hlth Sci, SE-17177 Stockholm, Sweden.;Stockholm Cty Council, Ctr Epidemiol & Community Med, Stockholm, Sweden..
    Lager, Anton
    Karolinska Inst, Dept Publ Hlth Sci, SE-17177 Stockholm, Sweden.;Stockholm Cty Council, Ctr Epidemiol & Community Med, Stockholm, Sweden..
    Residential area and physical activity: A multi-level study of 68,000 adults in Stockholm County2017In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 45, no 1, 25-32 p.Article in journal (Refereed)
    Abstract [en]

    Aim: To determine whether there are systematic differences in physical activity between residential areas after extensive control for sociodemographic factors at the individual level. Methods: Multi-level regressions of walking/bicycling, sedentary activities, household work and exercise were carried out in a representative sample of 68,303 adults in 39 residential areas in Stockholm County, first adjusting at the individual level for country of birth, sex, age, education, occupational class and income. The type of housing was then considered at the individual level or, for walking/bicycling and exercise, at both the individual and area levels (as a measure of area density). Results: After adjustment for sociodemographic factors, differences between residential areas remained in walking/bicycling, corresponding to 0.27 SD, or 50 min/week between the most and least active areas. Forty per cent of this difference could be explained by the type of housing at the area level. For sedentary activities and household work, respectively, much of the variation that remained after adjustment for sociodemographic factors was, in turn, explained by the type of housing at the individual level, leaving a difference of 0.16 SD (80 min/week) and 0.13 SD (60 min/week), respectively. For exercise, the corresponding difference was 0.11 SD (11 min/week, not sensitive to housing). Conclusions: Area level factors may influence walking/bicycling. High area density was associated with more activity. However, high density also comes with a type of housing (apartments) that is associated with less household work and, surprisingly, more sedentary activities, introducing a challenging trade-off. The differences in exercise were smaller than for all other types of activities.

  • 22.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    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.
    Responsibility for scientific misconduct in collaborative papers2017In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633Article in journal (Refereed)
    Abstract [en]

    This paper concerns the responsibility of co-authors in cases of scientific misconduct. Arguments in research integrity guidelines and in the bioethics literature concerning authorship responsibilities are discussed. It is argued that it is unreasonable to claim that for every case where a research paper is found to be fraudulent, each author is morally responsible for all aspects of that paper, or that one particular author has such a responsibility. It is further argued that it is more constructive to specify what task responsibilities come with different roles in a project and describe what kinds of situations or events call for some kind of action, and what the appropriate actions might be.

  • 23.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ctr Invest Filosof, Neuroeth Program, Buenos Aires, DF, Argentina.; European Human Brain Project, Eth & Soc Subproject, Uppsala, Sweden..
    Salud reproductiva, legislación y opciones de maternidad2017In: International Journal of Feminist Approaches to Bioethics, ISSN 1937-4585, E-ISSN 1937-4577, Vol. 10, no 1, 248-251 p.Article, book review (Other academic)
  • 24.
    Salles, Arleen
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Social Neuroscience and Neuroethics: A Fruitful Synergy2017In: Neuroscience and Social Science: The Missing Link / [ed] A. Ibáñez et al. (eds.), Springer, 2017, 531-546 p.Chapter in book (Refereed)
    Abstract [en]

    Social neuroscience is shedding new light on the relationship between the brain and its environments. In the process, and despite criticism from the social sciences, the field is contributing to the discussion of long-standing controversies concerning, for example, the "nature-nurture" distinction and the relationships between social and neurobiological structures.

    In this chapter, we argue that in this endeavor social neuroscience would benefit from partnering with neuroethics insofar as their respective areas and methods of explanation are complementary rather than in competition. We provide a richer account of neuroethics than the one given in social neuroscientists' common descriptions of that field and suggest that, when understood in this richer (and in our view more adequate) fashion, neuroethics may open up productive avenues for research and play a key role in allowing us to determine social neuroscience's contribution to unveiling important epistemological as well as ontological notions. Accordingly, social neuroscience and neuroethics may form a constructive partnership.

  • 25.
    Farisco, Michele
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    The Computational Shift in Neuroscience: A Multifaceted Neuroethical Analysis2017In: AJOB Neuroscience, ISSN 2150-7740, E-ISSN 2150-7759, Vol. 8, no 1, W4-W5 p.Article in journal (Refereed)
  • 26.
    Eriksson, Stefan
    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.
    Helgesson, Gert
    Karolinska institutet.
    The false academy: Predatory publishing in science & bioethics2017In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 20, no 2, 163-170 p.Article in journal (Refereed)
    Abstract [en]

    This paper describes and discusses the phenomenon ‘predatory publishing’, in relation to both academic journals and books, and suggests a list of characteristics by which to identify predatory journals. It also raises the question whether traditional publishing houses have accompanied rogue publishers upon this path. It is noted that bioethics as a discipline does not stand unaffected by this trend. Towards the end of the paper it is discussed what can and should be done to eliminate or reduce the effects of this development. The paper concludes that predatory publishing is a growing phenomenon that has the potential to greatly affect both bioethics and science at large. Publishing papers and books for profit, without any genuine concern for content, but with the pretence of applying authentic academic procedures of critical scrutiny, brings about a worrying erosion of trust in scientific publishing.

  • 27.
    Mascalzoni, Deborah
    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.
    Petrini, Carlo
    Taruscio, Domenica
    Gainotti, Sabina
    The Role of Solidarity(-ies) in Rare Diseases Research.2017In: Advances in Experimental Medicine and Biology, ISSN 0065-2598, E-ISSN 2214-8019, Vol. 1031, 589-604 p.Article in journal (Refereed)
    Abstract [en]

    Solidarity plays a relevant role in rare diseases (RDs) research to create and enable research in the field. In Europe RDs are estimated to affect between 27 and 36 million people even though single RDs can count very few patients, making the contribution of everyone essential to reach solid results. Often RD research is initiated by patient groups devoting substantial time and resources to the scientific enterprise. In RD research solidarity is often evocated and expressed, in different ways and on different levels, so that it is possible to talk about "solidarities" played by different stakeholders and sometimes conflicting with each other. In this paper we describe different contexts in which solidarity is expressed and embedded in RD research, in particular the context of tight relationships between individuals and their families or in small communities/ethnic groups; among individuals suffering from different RDs and researchers working on a specific RD or a group of RDs, and within society at large. In all these cases the different types of solidarity should be balanced against each other and also against conflicting values. The request to a patient to share data and samples to increase scientific knowledge on the basis of solidarity values needs to be balanced against the need to protect her privacy and autonomy; the duty for a researcher to allow fair access to RD sample and data collections which were donated in a spirit of solidarity is balanced against the need to be competitive in the research world. In the Report "Solidarity. Reflections on an emerging concept in bioethics", the Nuffield Council of Bioethics defines solidarity as "shared practices reflecting a collective commitment to carry 'costs' (financial, social, emotional or otherwise) to assist others". Therefore, if a solidarity framework has to be solid and ethically sound it needs to be framed as a shared value, reflected in the different practices by all the stakeholders and be based on reciprocity (not one sided). The context of solidarity(ies) provides a solid base for framing the research endeavor as collectively valuable, not only for possible results of the research, but as intrinsic valid societal practice. This paper tries to draw the lessons on solidarity that we can derive from the RD world where "solidarities" have been part of the game for long time and are declined on many different levels.

  • 28.
    Evers, Kathinka
    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.
    Giordano, James
    Departments of Neurology and Biochemistry, Neuroethics Studies Program-Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, DC, United States.
    The Utility- and Use–of Neurotechnology to Recover Consciousness: Technical and Neuroethical Considerations in Approaching the “Hard Question” of Neuroscience2017In: Frontiers in Human Neuroscience, ISSN 1662-5161, E-ISSN 1662-5161, Vol. 11, 1-3 p., 564Article in journal (Refereed)
  • 29.
    Evers, Kathinka
    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.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Theoretical Framing of Neuroethics: The Need for a Conceptual Approach2017In: Debates About Neuroethics: Perspectives on Its Development, Focus, and Future / [ed] Eric Racine; John Aspler, Springer Publishing Company, 2017, 1, 89-107 p.Chapter in book (Refereed)
    Abstract [en]

    There are different dominant perspectives, theories, and methodologies within neuroethics, each importantly shaping the identification, understanding, and discussion of the relevant ethical, social, philosophical and scientific issues. In this chapter, we first provide a brief overview of current neuroethical approaches calling attention to a common tendency to underestimate the role and value of conceptual analysis. Against that background, we present and develop the theoretical framework of fundamental neuroethics. Next, we suggest that neuroethics should be built on the sound scientific and philosophical foundations of informed materialism. Finally, we apply the proposed theoretical framework to the neuroethical discussion of brain simulation.

  • 30.
    Eriksson, Stefan
    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.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    Time to stop talking about ‘predatory journals’2017In: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857Article in journal (Refereed)
    Abstract [en]

    Key points: • The term ‘predatory journal’ hides a wide range of scholarly publishing misconduct.• The term ‘predatory journal’ unhelpfully bundles misconduct with poor quality.• The term ‘predatory journal’ blinds us to important possibilities, needs, and questions arising in the developing scholarly landscape.• The current scholarly publishing environment cannot rely on such a simplified classification of journals into predatory or not.

  • 31.
    Ancillotti, Mirko
    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.
    Holmberg, Niklas
    Abo Akad Univ, Theol Eth & Philosophy Relig, Turku, Finland..
    Lindfelt, Mikael
    Abo Akad Univ, Theol Eth & Philosophy Relig, Turku, Finland..
    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.
    Uncritical and unbalanced coverage of synthetic biology in the Nordic press2017In: Public Understanding of Science, ISSN 0963-6625, E-ISSN 1361-6609, Vol. 26, no 2, 235-250 p.Article in journal (Refereed)
    Abstract [en]

    Synthetic biology will probably have a high impact on a variety of fields, such as healthcare, environment, biofuels, agriculture, and so on. A driving theme in European research policy is the importance of maintaining public legitimacy and support. Media can influence public attitudes and are therefore an important object of study. Through qualitative content analysis, this study investigates the press coverage of synthetic biology in the major Nordic countries between 2009 and 2014. The press coverage was found to be event-driven and there were striking similarities between countries when it comes to framing, language use, and treated themes. Reporters showed a marked dependence on their sources, mainly scientists and stakeholders, who thus drives the media agenda. The media portrayal was very positive, with an optimistic look at future benefits and very little discussion of possible risks.

  • 32.
    Eilers, R.
    et al.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, POB 30-001, NL-9700 RB Groningen, Netherlands.;Natl Inst Publ Hlth & Environm RIVM, Ctr Infect Dis Control, POB 1, NL-3720 BA Bilthoven, Netherlands..
    de Melker, H. E.
    Natl Inst Publ Hlth & Environm RIVM, Ctr Infect Dis Control, POB 1, NL-3720 BA Bilthoven, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Natl Inst Publ Hlth & Environm RIVM, Ctr Nutr Prevent & Hlth Serv, NL-3720 BA Bilthoven, Netherlands.
    Krabbe, P. F. M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Epidemiol, POB 30-001, NL-9700 RB Groningen, Netherlands..
    Vaccine preferences and acceptance of older adults2017In: Vaccine, ISSN 0264-410X, E-ISSN 1873-2518, Vol. 35, no 21, 2823-2830 p.Article in journal (Refereed)
    Abstract [en]

    Background: Expanding vaccination programs for the older population might be important as older adults are becoming a larger proportion of the general population. The aim of this study is to determine the relative importance of vaccine and disease specific characteristics and acceptance for Dutch older adults, including pneumococcal disease, herpes zoster, pertussis vaccination, and influenza vaccination.

    Methods: A discrete choice experiment was conducted to generate choice data that was analyzed using a mixed multinomial logit statistical model.

    Results: Important factors that were associated with vaccination acceptance in older adults are high mortality risk of the infectious disease, high susceptibility of getting the infectious disease, and high vaccine effectiveness. Age, influenza vaccination in 2013 and self-perceived health score were identified as personal factors that affect vaccine preference. Potential vaccination rates of older adults were estimated at 68.1% for pneumococcal vaccination, 58.1% for herpes zoster vaccination, 53.9% for pertussis vaccination and 54.3% for influenza vaccination. For persons aged 50-65, potential vaccination rates were estimated at 58.1% for pneumococcal vaccination, 49.5% for herpes zoster vaccination, 43.9% for pertussis vaccination and 42.2% for influenza vaccination. For persons aged 65 and older, these were respectively 76.2%, 67.5%, 57.5% and 65.5%.

    Discussion: Our results suggest that older adults are most likely to accept pneumococcal vaccination of the four vaccines. Information provision accompanied with the implementation of a new vaccine has to be tailored for the individual and the vaccine it concerns. Special attention is needed to ensure high uptake among persons aged 50-65 years.

  • 33.
    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.
    What should we do about predatory publishing?2017In: European Science Editing, ISSN 0258-3127, Vol. 43, no 4, 80-82 p.Article in journal (Refereed)
    Abstract [en]

    ‘Predatory’ publishing covers a wide range of journals with different characteristics. Society and scientists should not accept deceitful practices in science. Neither should we accept anything less than excellence from publishing houses. Therefore, we should take three measures: first, form committees for each research field to keep track of journals and publishers; second, create a forum where scientists can share their experiences of predatory journals; third, develop software to help scientists and officials spot references to predatory journals in papers and in applications for funding, promotions, or positions.

  • 34.
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Alternative Rule-Making within European Bioethics - Necessary and Therefore Legitimate?2016In: Tilburg Law Review, ISSN 2211-0046, Vol. 21, no 2, 169-192 p.Article in journal (Refereed)
    Abstract [en]

    There are two core principles in the law and ethics of biomedical research that could be considered universally accepted: first, all handling of personal data and human biological samples is conditioned by the informed consent of the individual involved; second, all medical research on human biological samples and personal data should be placed under the review of research ethics committees. These concepts are included in international, regional and national guidelines, rules and regulations for processing of data and biobanking. However, the legal implementations are carried out within each national legal order, by national organs enacting administrative decisions applicable within the state. In order for the research project to function in a multinational setting, the EU has developed soft law tools and governance mechanisms to facilitate European biomedical research. The question is whether this can be considered valuable and legitimate on the grounds of enhancing conditions for medical research.

  • 35.
    Ancillotti, Mirko
    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.
    Rerimassie, Virgil
    Seitz, Stefanie B.
    Steurer, Walburg
    An Update of Public Perceptions of Synthetic Biology: Still Undecided?2016In: NanoEthics, ISSN 1871-4757, E-ISSN 1871-4765, Vol. 10, no 3, 309-325 p.Article in journal (Refereed)
    Abstract [en]

    The discourse on the fundamental issues raised by synthetic biology, such as biosafety and biosecurity, intellectual property, environmental consequences and ethical and societal implications, is still open and controversial. This, coupled with the potential and risks the field holds, makes it one of the hottest topics in technology assessment today. How a new (bio)technology is perceived by the public influences the manner in which its products and applications will be received. Therefore, it is important to learn how people perceive synthetic biology. This work gathers, integrates and discusses the results of three studies of public perceptions of synthetic biology: (1) an analysis of existing research on how media portray synthetic biology across 13 European countries and in the USA, (2) the Meeting of Young Minds, a public debate between prospective politicians and synthetic biologists in the Netherlands and (3) the experiences of citizen panels and focus groups in Austria, the UK and the USA. The results show that the media are generally positive in their reports on synthetic biology, rather unbalanced in their view of potential benefits (emphasized) and risks (downplayed), and also heavily influenced by the sources of the stories, namely scientists and stakeholders. Among the prospective Dutch politicians, there were positive expectations as well as very negative ones. Some of these positions are also shared by participants in public dialogue experiments, such as not only the demand for information, transparency and regulation but also a sense of resignation and ineluctability of scientific and technological progress.

  • 36.
    Oliveri, Serena
    et al.
    Univ Milan, Dept Oncol & Hematooncol, Interdisciplinary Res Ctr Decis Making Proc IRIDe, Milan, Italy.;IEO, Appl Res Div Cognit & Psychol Sci, Milan, Italy..
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Renzi, Chiara
    IEO, Appl Res Div Cognit & Psychol Sci, Milan, Italy..
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Pravettoni, Gabriella
    Univ Milan, Dept Oncol & Hematooncol, Interdisciplinary Res Ctr Decis Making Proc IRIDe, Milan, Italy.;IEO, Appl Res Div Cognit & Psychol Sci, Milan, Italy..
    Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?2016In: Journal of Medical Genetics, ISSN 0022-2593, E-ISSN 1468-6244, Vol. 53, no 12, 798-799 p.Article in journal (Refereed)
  • 37.
    Johnsson, Linus
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    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.
    Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research2016In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 7, 471-478 p.Article in journal (Refereed)
    Abstract [en]

    Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.

  • 38.
    Lövgren, Malin
    et al.
    Karolinska Inst, Stockholm, Sweden..
    Bylund-Grenklo, Tove
    Karolinska Inst, Stockholm, Sweden.;Linnaeus Univ, Vaxjo, Sweden..
    Jalmsell, Li
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Visby Lasarett, Visby, Sweden..
    Wallin, Alexandra Eilegard
    Dalarna Univ, Falun, Sweden..
    Kreicbergs, Ulrika
    Karolinska Inst, Stockholm, Sweden.;Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden..
    Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 4, 297-305 p.Article in journal (Refereed)
    Abstract [en]

    Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.

  • 39.
    Farisco, Michele
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Centro de Investigaciones Filosoficas.
    Big Science, Brain Simulation and Neuroethics2016In: AJOB Neuroscience, ISSN 2150-7740, E-ISSN 2150-7759, Vol. 7, no 1, 28-30 p.Article in journal (Refereed)
    Abstract [en]

    We believe that it is valuable to investigate conceptual understandings of the brain andof simulation in order to better grasp the ethical implicationsof simulation technology in particular. Such conceptualexamination is offered by fundamental neuroethics. Inthis commentary we propose a reading of simulationwithin the framework of fundamental neuroethics.

  • 40.
    Bessani, Alysson
    et al.
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Brandt, Joergen
    Humboldt Univ, Berlin, Germany..
    Bux, Marc
    Humboldt Univ, Berlin, Germany..
    Cogo, Vinicius
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Dimitrova, Lora
    Charite, Berlin, Germany..
    Dowling, Jim
    KTH Royal Inst Technol, Stockholm, Sweden..
    Gholami, Ali
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hakimzadeh, Kamal
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hummel, Micheal
    Charite, Berlin, Germany..
    Ismail, Mahmoud
    KTH Royal Inst Technol, Stockholm, Sweden..
    Laure, Erwin
    KTH Royal Inst Technol, Stockholm, Sweden..
    Leser, Ulf
    Humboldt Univ, Berlin, Germany..
    Litton, Jan-Eric
    Karolinska Inst, Solna, Sweden..
    Martinez, Roxanna
    Karolinska Inst, Solna, Sweden..
    Niazi, Salman
    KTH Royal Inst Technol, Stockholm, Sweden..
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Zimmermann, Karin
    Charite, Berlin, Germany..
    BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets2016In: BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 2016, 89-105 p.Conference paper (Refereed)
    Abstract [en]

    Biobanks store and catalog human biological material that is increasingly being digitized using next-generation sequencing (NGS). There is, however, a computational bottleneck, as existing software systems are not scalable and secure enough to store and process the incoming wave of genomic data from NGS machines. In the BiobankCloud project, we are building a Hadoop-based platform for the secure storage, sharing, and parallel processing of genomic data. We extended Hadoop to include support for multi-tenant studies, reduced storage requirements with erasure coding, and added support for extensible and consistent metadata. On top of Hadoop, we built a scalable scientific workflow engine featuring a proper workflow definition language focusing on simple integration and chaining of existing tools, adaptive scheduling on Apache Yarn, and support for iterative dataflows. Our platform also supports the secure sharing of data across different, distributed Hadoop clusters. The software is easily installed and comes with a user-friendly web interface for running, managing, and accessing data sets behind a secure 2-factor authentication. Initial tests have shown that the engine scales well to dozens of nodes. The entire system is open-source and includes pre-defined workflows for popular tasks in biomedical data analysis, such as variant identification, differential transcriptome analysis using RNA-Seq, and analysis of miRNA-Seq and ChIP-Seq data.

  • 41.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Brain Imaging and Privacy Concerns2016In: Neurotechnology and Direct Brain Communication / [ed] Farisco Michele & Evers Kathinka, Routledge, 2016, 143-157 p.Chapter in book (Refereed)
    Abstract [en]

    In this chapter, the author highlights some efforts to approach the issue of functional neuro-imaging and its possible threat to privacy in the neuroethics literature. Two main approaches or strategies are usually used in the discussion: the first strategy consists in a description and discussion of what neuro-imaging can and cannot do with a focus on the technical and methodological problems that bedevil the technology. The second strategy focuses on the metaphysical assumptions about the mind underlying concerns on the subject of neuro-imaging and mental privacy. Sometimes these two strategies are used jointly. There is a third strategy, less common in the neuroethics literature, that brackets technical, methodological, and metaphysical issues to put the focus on the discussion of normative questions. The questions raised are: why would neuroimaging’s impinging on privacy be problematic? What is valuable about mental privacy? Would it be morally undesirable to have less of it? My main aim is to outline the first two strategies clarifying their implications for the privacy debate, and then focus more on the third. I end by proposing to expand the normative discussion to incorporate some of the issues raised by a recent account of privacy as contextual integrity. 

  • 42. Bell, Jessica
    et al.
    Ancillotti, Mirko
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Coathup, Victoria
    Coy, Sarah
    Rigter, Tessel
    Tatum, Travis
    Grewal, Jasjote
    Akcesme, Faruk Berat
    Brkić, Jovana
    Causevic-Ramosevac, Anida
    Milovanovic, Goran
    Nobile, Marianna
    Pavlidis, Cristiana
    Finlay, Teresa
    Kaye, Jane
    Challenges and opportunities for ELSI early career researchers2016In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 17, 37Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline.

    MAIN TEXT: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics.

    CONCLUSION: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.

  • 43.
    Jalmsell, Li
    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. Visby Lasarett, Oncol Unit, Visby, Sweden..
    Lovgren, Malin
    Karolinska Inst, Karolinska Univ Hosp, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.;Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden..
    Kreicbergs, Ulrika
    Karolinska Inst, Karolinska Univ Hosp, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden.;Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden..
    Henter, Jan-Inge
    Karolinska Inst, Karolinska Univ Hosp, Dept Womens & Childrens Hlth, Childhood Canc Res Unit, Stockholm, Sweden..
    Frost, Britt-Marie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Univ Uppsala Hosp, Dept Pediat, Uppsala, Sweden..
    Children with cancer share their views: tell the truth but leave room for hope2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 9, 1094-1099 p.Article in journal (Refereed)
    Abstract [en]

    AimOne in five children diagnosed with cancer will die from the disease. The aim of the study was to explore how children with cancer want to receive bad news about their disease, such as when no more treatment options are available. MethodsWe conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audio-taped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible. ResultsAll children expressed that they wanted truthful information and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents. ConclusionChildren with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful.

  • 44. Roberts, James M
    et al.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ness, Roberta B
    Poston, Lucilla
    Collaboration to Understand Complex Diseases: Preeclampsia and Adverse Pregnancy Outcomes2016In: Hypertension, ISSN 0194-911X, E-ISSN 1524-4563, Vol. 67, no 4, 681-687 p.Article, review/survey (Refereed)
  • 45.
    Niemiec, Emilia
    et al.
    Univ Bologna, CIRSFID, Erasmus Plus Doctoral Programme Law Sci & Technol, Via Galliera 3, I-40121 Bologna, Italy.;Univ Turin, Dept Law, Turin, Italy.;Leibniz Univ Hannover, Ctr Eth & Law Life Sci, Hannover, Germany..
    Borry, Pascal
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Leuven, Belgium..
    Pinxten, Wim
    Hasselt Univ, Fac Med & Life Sci, Hasselt, Belgium..
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies2016In: Human Mutation, ISSN 1059-7794, E-ISSN 1098-1004, Vol. 37, no 12, 1248-1256 p.Article in journal (Refereed)
    Abstract [en]

    Whole exome sequencing (WES) and whole genome sequencing (WGS) have become increasingly available in the research and clinical settings and are now also being offered by direct-to-consumer (DTC) genetic testing (GT) companies. This offer can be perceived as amplifying the already identified concerns regarding adequacy of informed consent (IC) for both WES/WGS and the DTC GT context. We performed a qualitative content analysis of Websites of four companies offering WES/WGS DTC regarding the following elements of IC: pre-test counseling, benefits and risks, and incidental findings (IFs). The analysis revealed concerns, including the potential lack of pre-test counseling in three of the companies studied, missing relevant information in the risks and benefits sections, and potentially misleading information for consumers. Regarding IFs, only one company, which provides opportunistic screening, provides basic information about their management. In conclusion, some of the information (and related practices) present on the companies' Web pages salient to the consent process are not adequate in reference to recommendations for IC for WGS or WES in the clinical context. Requisite resources should be allocated to ensure that commercial companies are offering high-throughput sequencing under responsible conditions, including an adequate consent process.

  • 46.
    Gholami, Ali
    et al.
    KTH Royal Institute of Technology.
    Lind, Anna-Sara
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Litton, Jan-Eric
    Department of Medical Epidemiology and Biostatistics, Karolinska institutet.
    Edlund, Åke
    High Performance Computing and Visualization Department, KTH Royal Institute of Technology.
    Laure, Erwin
    High Performance Computing and Visualization Department, KTH Royal Institute of Technology.
    Design and Implementation of the advanced cloud privacy threat modeling2016In: International Journal of Network Security & Its Applications, ISSN 0975-2307, E-ISSN 0974-9330, Vol. 8, no 2, 103-122 p.Article in journal (Refereed)
    Abstract [en]

    Privacy-preservation for sensitive data has become a challenging issue in cloud computing. Threat modeling as a part of requirements engineering in secure software development provides a structured approach for identifying attacks and proposing countermeasures against the exploitation of vulnerabilities in a system. This paper describes an extension of Cloud Privacy Threat Modeling (CPTM) methodology for privacy threat modeling in relation to processing sensitive data in cloud computing environments. It describes the modeling methodology that involved applying Method Engineering to specify characteristics of a cloud privacy threat modeling methodology, different steps in the proposed methodology and corresponding products. In addition, a case study has been implemented as a proof of concept to demonstrate the usability of the proposed methodology. We believe that the extended methodology facilitates the application of a privacy-preserving cloud software development approach from requirements engineering to design.

  • 47.
    Falkenström, Erica
    et al.
    Stockholm Univ, S-10691 Stockholm, Sweden..
    Ohlsson, Jon
    Stockholm Univ, S-10691 Stockholm, Sweden..
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Developing ethical competence in healthcare management2016In: Journal of Workplace Learning, ISSN 1366-5626, E-ISSN 1758-7859, Vol. 28, no 1, 17-32 p.Article in journal (Refereed)
    Abstract [en]

    Purpose - The purpose of this paper was to explore what kind of ethical competence healthcare managers need in handling conflicts of interest (COI). The aim is also to highlight essential learning processes to develop healthcare managers' ethical competence. Design/methodology/approach - A qualitative study was performed. Semi-structured interviews with ten Swedish healthcare managers from different care providers were carried out twice and analysed through step-wise categorisation. Findings - Four categories of COI were revealed and two ways (passive and active) in which COI were handled. Ethical guidelines did not help the healthcare managers to handle the COI, and none of the managers made use of any sort of systematic ethical analysis. However, certain ethical competence was of great importance to identify and handle COI, consisting of contextual understanding, rational emotions, some theoretical knowledge and a suitable language. Organising work so that ethical analysis can be carried out is of great importance, and top management needs to clearly express the importance of ethical competence and allocate resources to allow adequate learning processes. Originality/value - This paper highlights the management level and focuses on how work-integrated learning-processes can enable ethical competence. Ethical competence at the management level is essential both to comply with the constitution and legal requirements regarding healthcare, and so that managers are able to analyse COI and justify their decisions.

  • 48.
    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.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Silen, Marit
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, 516-523 p.Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 49.
    Niemiec, Emilia
    et al.
    Univ Bologna, Joint Int PhD Program Law Sci & Technol, Via Galliera 3, I-40121 Bologna, Italy.;Univ Turin, Dept Law, Lungo Dora Siena 100 A, I-10153 Turin, Italy.;Leibniz Univ Hannover, Ctr Eth & Law Life Sci, Klagesmarkt 14-17, D-30159 Hannover, Germany..
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ethical issues in consumer genome sequencing: Use of consumers' samples and data2016In: APPLIED AND TRANSLATIONAL GENOMICS, ISSN 2212-0661, Vol. 8, 23-30 p.Article in journal (Refereed)
    Abstract [en]

    High throughput approaches such as whole genome sequencing (WGS) and whole exome sequencing (WES) create an unprecedented amount of data providing powerful resources for clinical care and research. Recently, WGS and WES services have been made available by commercial direct-to-consumer (DTC) companies. The DTC offer of genetic testing (GT) has already brought attention to potentially problematic issues such as the adequacy of consumers' informed consent and transparency of companies' research activities. In this study, we analysed the websites of four DTC GT companies offering WGS and/or WES with regard to their policies governing storage and future use of consumers' data and samples. The results are discussed in relation to recommendations and guiding principles such as the "Statement of the European Society of Human Genetics on DTC GT for health-related purposes" (2010) and the "Framework for responsible sharing of genomic and health-related data" (Global Alliance for Genomics and Health, 2014). The analysis reveals that some companies may store and use consumers' samples or sequencing data for unspecified research and share the datawith third parties. Moreover, the companies do not provide sufficient or clear information to consumers about this, which can undermine the validity of the consent process. Furthermore, while all companies state that they provide privacy safeguards for data and mention the limitations of these, information about the possibility of re-identification is lacking. Finally, although the companies that may conduct research do include information regarding proprietary claims and commercialisation of the results, it is not clear whether consumers are aware of the consequences of these policies. These results indicate that DTC GT companies still need to improve the transparency regarding handling of consumers' samples and data, including having an explicit and clear consent process for research activities.

  • 50.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ethical Issues in Preconception Genetic Carrier Screening2016In: Upsala Journal of Medical Sciences, ISSN 0300-9734, E-ISSN 2000-1967, Vol. 121, no 4, 295-298 p.Article in journal (Refereed)
    Abstract [en]

    Population-based preconception genetic carrier screening programmes (PCS) with expanded panels are currently being developed in the Netherlands. This form of genetic screening for recessive traits differs from other forms of genetic testing and screening in that it is offered to persons not known to have an increased risk of being carriers of genetic traits for severe recessive diseases and in that they include tests for a large number of traits, potentially several hundred. This raises several ethical issues around justice, consequences, and autonomy. It will be argued that most of these ethical problems call for cautious reflection when setting up PCS and similar programmes within preconception care. It is moreover argued that it is ethically problematic to have an official aim and failing to mention possibly legitimate public aims that actually drive the development of PCS.

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