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  • 1.
    Aarum Hansen, Heidi
    et al.
    Department for Health and Social Studies, Østfold University College, Halden, Norway .
    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. Department for Health and Social Studies, Østfold University College, Halden, Norway .
    Digital society generates new challenges on Child Welfare Services2017In: Croatian Medical Journal, ISSN 0353-9504, E-ISSN 1332-8166, Vol. 58, no 1, p. 80-83Article 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.

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  • 2.
    Ahlin Marceta, Jesper
    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.
    Juth, Niklas
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Personal autonomy: From practice to theory2022In: Theoria, ISSN 0040-5825, E-ISSN 1755-2567, Vol. 88, no 6, p. 1063-1065Article in journal (Other academic)
  • 3.
    Ahmadi, Zainab
    et al.
    Lund Univ, Dept Clin Sci Lund, Resp Med Allergol & Palliat Med, Lund, Sweden..
    Björk, Joar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Karolinska Inst, Stockholm Ctr Healthcare Eth CHE, LIME, Stockholm, Sweden.
    Gilljam, Hans
    Karolinska Inst, Dept Global Publ Hlth, Stockholm, Sweden..
    Gogineni, Madhuri
    Stockholms Sjukhem, Palliat Home Care & Hosp Wards, Stockholm, Sweden..
    Gustafsson, Torbjörn
    Runold, Michael
    Karolinska Univ Hosp, Dept Resp Med & Allergy, Stockholm, Sweden.;Karolinska Inst, Dept Med Solna, Resp Med Unit, Stockholm, Sweden..
    Ringbæk, Thomas
    Univ Hosp Umeå, Dept Resp Med & Allergy, Umeå, Sweden.;Allergy & Lung Clin, Elsinore, Denmark..
    Wahlberg, Josefin
    Blekinge Hosp, Dept Med, Karlskrona, Sweden..
    Wendel, Lotta
    Malmö Univ, Fac Hlth & Soc, Malmö, Sweden..
    Ekström, Magnus
    Lund Univ, Dept Clin Sci Lund, Resp Med Allergol & Palliat Med, Lund, Sweden..
    Smoking and home oxygen therapy: a review and consensus statement from a multidisciplinary Swedish taskforce2024In: European Respiratory Review, ISSN 0905-9180, E-ISSN 1600-0617, Vol. 33, no 171, article id 230194Article, review/survey (Refereed)
    Abstract [en]

    Background: Home oxygen therapy (HOT) improves survival in patients with hypoxaemic chronic respiratory disease. Most patients evaluated for HOT are former or active smokers. Oxygen accelerates combustion and smoking may increase the risk of burn injuries and fire hazards; therefore, it is considered a contraindication for HOT in many countries. However, there is variability in the practices and policies regarding this matter. This multidisciplinary Swedish taskforce aimed to review the potential benefits and risks of smoking in relation to HOT, including medical, practical, legal and ethical considerations.

    Methods: The taskforce of the Swedish Respiratory Society comprises 15 members across respiratory medicine, nursing, medical law and ethics. HOT effectiveness and adverse risks related to smoking, as well as practical, legal and ethical considerations, were reviewed, resulting in five general questions and four PICO (population–intervention–comparator–outcome) questions. The strength of each recommendation was rated according to the GRADE (grading of recommendation assessment, development and evaluation) methodology.

    Results: General questions about the practical, legal and ethical aspects of HOT were discussed and summarised in the document. The PICO questions resulted in recommendations about assessment, management and follow-up of smoking when considering HOT, if HOT should be offered to people that meet the eligibility criteria but who continue to smoke, if a specific length of time of smoking cessation should be considered before assessing eligibility for HOT, and identification of areas for further research.

    Conclusions: Multiple factors need to be considered in the benefit/risk evaluation of HOT in active smokers. A systematic approach is suggested to guide healthcare professionals in evaluating HOT in relation to smoking.

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    FULLTEXT01
  • 4.
    Aicardi, Christine
    et al.
    King’s College London.
    Akintoye, Simisola
    De Montfort University.
    Fothergill, B. Tyr
    De Montfort University.
    Guerrero, Manuel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Departament of Bioethics and Medical Humanities, University of Chile.
    Klinker, Gudrun
    Technical University Munich.
    Knight, William
    De Montfort University.
    Klüver, Lars
    The Danish Board of Technology.
    Morel, Yannick
    University of Maastricht.
    Morin, Fabrice O.
    Technical University Munich.
    Stahl, Bernd
    De Montfort University.
    Ulnicane, Inga
    De Montfort University.
    Ethical and Social Aspectos of Neurorobotics2020In: Science and Engineering Ethics, ISSN 1353-3452, E-ISSN 1471-5546Article in journal (Refereed)
    Abstract [en]

    The interdisciplinary field of neurorobotics looks to neuroscience to overcome limitations of modern robotics technology, to robotics to advance our understanding of the neural system's inner workings, and to information technology to develop tools that support those complementary endeavours. The development of these technologies is still at an early stage, which makes them an ideal candidate for proactive and anticipatory ethical reflection.

    Download full text (pdf)
    Ethical and Social Aspects of Neurorobotics
  • 5. Al-Janabi, Hareth
    et al.
    Coast, Joanna
    Flynn, Terry N
    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 do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.2008In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 67, no 1, p. 111-21Article in journal (Refereed)
    Abstract [en]

    Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

  • 6. Al-Janabi, Hareth
    et al.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Coast, Joanna
    Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.2012In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 21, no 1, p. 167-76Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation. This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A).

    METHODS: In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews.

    RESULTS: Five over-arching attributes of capability wellbeing were identified for the measure: "stability", "attachment", "achievement", "autonomy" and "enjoyment". One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system.

    CONCLUSIONS: The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions.

  • 7.
    Allyse, Megan A.
    et al.
    Mayo Clin, Rochester, MN USA..
    Meagher, Karen M.
    Mayo Clin, Rochester, MN USA..
    Michie, Marsha
    Case Western Reserve Univ, Cleveland, OH 44106 USA..
    Isasi, Rosario
    Univ Miamis, Coral Gables, FL USA..
    Ormond, Kelly E.
    Swiss Fed Inst Technol, Zurich, Switzerland.;Stanford Univ, Sch Med, Stanford, CA 94305 USA..
    Bonhomme, Natasha
    Genet Alliance, Darlinghurst, NSW, Australia..
    Bombard, Yvonne
    Univ Toronto, Toronto, ON, Canada..
    Howard, Heidi
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Musunuru, Kiran
    Univ Penn, Perelman Sch Med, Philadelphia, PA 19104 USA..
    Riggan, Kirsten A.
    Mayo Clin, Rochester, MN USA..
    Rubeck, Sabina
    Case Western Reserve Univ, Cleveland, OH 44106 USA..
    Translational Justice in Human Gene Editing: Bringing End User Engagement and Policy Together2023In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 23, no 7, p. 55-58Article in journal (Other academic)
  • 8.
    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.
    Antibiotic Resistance: A Multimethod Investigation of Individual Responsibility and Behaviour2021Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The rapid development of antibiotic resistance is directly related to how antibiotics are used in society. The international effort to decrease and optimise the use of antibiotics should be sustained by the development of policies that are sensitive to social and cultural contexts.

    The overarching aim of the thesis was to explore and discuss the Swedish public’s beliefs, values and preferences influencing engagement in judicious antibiotic behaviour.

    Study I explored through focus group discussions lay people’s perceptions and beliefs about antibiotics and antibiotic resistance. The Health Belief Model was used to identify factors that could promote or hinder engagement in judicious antibiotic behaviour. Participants found antibiotic resistance to be a serious problem but were not equally worried about being affected by it. There was a tension between individual and collective reasons for engaging in judicious behaviour.

    Study II explored lay people’s views on the moral challenges posed by antibiotic resistance through focus group discussions. Participants identified in the decreasing availability of effective antibiotics a problem of justice, which involves individual as well as collective moral responsibility. Different levels of policy demandingness were discussed in light of these results.

    Study III investigated, through an online Discrete Choice Experiment, public preferences regarding antibiotic treatment and the relative weight of antibiotic resistance in decision-making. Public behaviour may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication may affect personal decision-making.

    Study IV clarified the notions of collective and individual moral responsibility for antibiotic resistance and suggested a virtue-based account thereof. While everyone is morally responsible for minimising his/her own contribution to antibiotic resistance, individuals do or do not engage in judicious antibiotic behaviour with different degrees of voluntariness.

    The findings suggest that people could change their behaviour due to concerns over their own contribution to antibiotic resistance. Effective health communication should be developed from an appraisal of people’s attitudes, beliefs and social norms that influence antibiotic resistance related behaviours. Policy demandingness should take into account socioeconomic factors characterising local realities. 

    List of papers
    1. Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions
    Open this publication in new window or tab >>Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions
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    2018 (English)In: BMC Public Health, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed) Published
    Abstract [en]

    Background

    High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    Methods

    Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20–81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    Results

    Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    Conclusions

    Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

    Place, publisher, year, edition, pages
    BioMed Central, 2018
    Keywords
    Antibiotic resistance, health belief model, health behavior, qualitative research, Sweden
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology
    Identifiers
    urn:nbn:se:uu:diva-362360 (URN)10.1186/s12889-018-6047-8 (DOI)000446405800003 ()30285689 (PubMedID)
    Available from: 2018-10-03 Created: 2018-10-03 Last updated: 2023-08-28Bibliographically approved
    2. An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance
    Open this publication in new window or tab >>An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance
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    2021 (English)In: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 14, no 1, p. 1-11, article id phaa033Article in journal (Refereed) Published
    Abstract [en]

    Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

    Place, publisher, year, edition, pages
    Oxford University PressOxford University Press (OUP), 2021
    Keywords
    Antibiotic resistance, responsibility, demandingness, justice
    National Category
    Ethics Medical Ethics
    Research subject
    Bioethics
    Identifiers
    urn:nbn:se:uu:diva-428884 (URN)10.1093/phe/phaa033 (DOI)000674745300001 ()34234840 (PubMedID)
    Available from: 2020-12-17 Created: 2020-12-17 Last updated: 2024-01-15Bibliographically approved
    3. Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment
    Open this publication in new window or tab >>Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment
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    2020 (English)In: International Journal of Antimicrobial Agents, ISSN 0924-8579, E-ISSN 1872-7913, Vol. 56, no 6, article id 106198Article in journal (Refereed) Published
    Abstract [en]

    Objectives: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices.

    Methods: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (attributes) were measured: contribution to antibiotic resistance, cost, side effects, failure rate and treatment duration. Latent class analysis models were used to determine attribute-level estimates and heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates.

    Results: All attributes influenced participants’ preferences for antibiotic treatment. For the majority of participants, contribution to antibiotic resistance was the most important attribute. Younger respondents found contribution to antibiotic resistance more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and higher financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important.

    Conclusions: All attributes can be considered as potential drivers of antibiotic use by lay people. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication has the potential to affect personal decision making.

    Keywords
    Antibiotic resistance, Discrete choice experiment, Preferences, Communication, Behaviour, Sweden
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology
    Research subject
    Health Care Research; Social Pharmacy; Social Medicine
    Identifiers
    urn:nbn:se:uu:diva-425711 (URN)10.1016/j.ijantimicag.2020.106198 (DOI)000596387600014 ()33080314 (PubMedID)
    Available from: 2020-11-18 Created: 2020-11-18 Last updated: 2021-01-27Bibliographically approved
    4. Individual moral responsibility for antibiotic resistance
    Open this publication in new window or tab >>Individual moral responsibility for antibiotic resistance
    2022 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 36, no 1, p. 3-9Article in journal (Refereed) Published
    Abstract [en]

    Antibiotic resistance (AR) is a major threat to public health and healthcare worldwide. In this article, we analyse and discuss the claim that taking actions to minimize AR is everyone's responsibility, focusing on individual moral responsibility. This should not be merely interpreted as a function of knowledge of AR and the proper use of antibiotics. Instead, we suggest a circumstantial account of individual responsibility for AR, where individuals do or do not engage in judicious antibiotic behaviour with different degrees of voluntariness. Furthermore, we suggest a notion of responsibility as a virtue, in which individuals have the opportunity to develop a sensitivity towards the AR theme and, consequently, are capable of engaging, actively and voluntarily, in judicious antibiotic behaviour. The development of such sensitivity depends on the creation of adequate circumstances, that is individual capacities and availability of resources.

    Place, publisher, year, edition, pages
    John Wiley & Sons, 2022
    Keywords
    Antibiotic resistance, individual responsibility, moral responsibility, virtue ethics, responsibility as virtue
    National Category
    Ethics
    Research subject
    Bioethics
    Identifiers
    urn:nbn:se:uu:diva-432509 (URN)10.1111/bioe.12958 (DOI)000702758800001 ()
    Available from: 2021-01-20 Created: 2021-01-20 Last updated: 2023-01-11Bibliographically approved
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  • 9.
    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.
    John Harris. Persona, potenzialità e pre-persona2013In: Sintesi Dialettica, ISSN 2037-2957, Vol. 6, no 1Article in journal (Refereed)
    Abstract [it]

    Secondo la nozione sviluppata da John Harris è da considerare persona l’individuo che dimostri la capacità di concepire se stesso in differenti tempi e luoghi e che sia capace di desiderare di fare esperienza di una vita a cui assegna un valore. Tale concezione viene analizzata ricostruendone la genesi, chiarendo quali criteri sottendono le scelte effettuate. L’elaborazione teorica di Harris viene posta a confronto con altre due formulazioni contemporanee, sviluppate rispettivamente da Peter Singer e Vittorio Possenti. Nell’ultima parte sono stati approfonditi criticamente due concetti che emergono dalla descrizione di Harris della persona e che sono ad essa collegati, ossia i concetti di potenzialità e pre-persona.

  • 10.
    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.
    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.
    Synthetic Biology in the Press: Media Portrayal in Sweden and Italy2016In: Ambivalences of Creating Life. : Societal and Philosophical Dimensions of Synthetic Biology / [ed] K Hagen, M Engelhard & G Toepfer, Dordrecht: Springer, 2016, p. 141-156Chapter in book (Refereed)
    Abstract [en]

    Synthetic biology is a rapidly evolving field which potentially can change how we live in and understand the world. Given its potential impact it is important to inform and involve the public so that it gains a proper understanding of synthetic biology and is in a position to assess its future applications and implications. This study investigates through qualitative content analysis the synthetic biology press coverage in Sweden and Italy between 2009 and 2013. The three major newspapers of each country were considered a good example of what was offered to the public in a period which witnessed important scientific advancements of the field and consequent media resonance. The framing of the articles was analyzed in the light of the idea that mass media not only inform the public but also contribute to the shaping of ideas. Language was analysed and found to be generally adequate. The topics were presented in an overall positive and optimistic tone, which was reflected also in the benefits and risks envisioned. The two countries can be considered rather different in many social and cultural respects, yet besides a few differences (mainly quantitative), striking similarities were found, probably related to a marked dependence on the common sources of the articles and the lack of critical scrutiny on the behalf of the media.

  • 11.
    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.
    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.
    Andersson, Dan I.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal Bräcke University College.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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. Erasmus University Rotterdam.
    Preferences regarding antibiotic treatment and the role of antibiotic resistance: a discrete choice experiment2020In: International Journal of Antimicrobial Agents, ISSN 0924-8579, E-ISSN 1872-7913, Vol. 56, no 6, article id 106198Article in journal (Refereed)
    Abstract [en]

    Objectives: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices.

    Methods: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (attributes) were measured: contribution to antibiotic resistance, cost, side effects, failure rate and treatment duration. Latent class analysis models were used to determine attribute-level estimates and heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates.

    Results: All attributes influenced participants’ preferences for antibiotic treatment. For the majority of participants, contribution to antibiotic resistance was the most important attribute. Younger respondents found contribution to antibiotic resistance more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and higher financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important.

    Conclusions: All attributes can be considered as potential drivers of antibiotic use by lay people. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication has the potential to affect personal decision making.

    Download full text (pdf)
    fulltext
  • 12.
    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.
    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.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal Bräcke University College.
    Andersson, Dan I.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    An Effort Worth Making: A Qualitative Study of How Swedes Respond to Antibiotic Resistance2021In: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 14, no 1, p. 1-11, article id phaa033Article in journal (Refereed)
    Abstract [en]

    Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views.

    Download full text (pdf)
    fulltext
  • 13.
    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.
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    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. Institute of Health Policy and Management, Erasmus University, Bayle (J) building - Campus Woudestein, Burgemeester Oudlaan 50, 3062 PA Rotterdam, The Netherlands.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Andersson, Dan I
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Ersta Sköndal Bräcke högskola, Stigbergsgatan 30, 100 61 Stockholm, Sweden.
    Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions2018In: BMC Public Health, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed)
    Abstract [en]

    Background

    High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    Methods

    Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20–81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    Results

    Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    Conclusions

    Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

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  • 14.
    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, p. 235-250Article 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.

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  • 15.
    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.
    Huls, Samare P. I.
    Krockow, Eva M.
    Veldwijk, Jorien
    Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands; Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands.
    Prosocial Behaviour and Antibiotic Resistance: Evidence from a Discrete Choice Experiment2023In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 17, no 2, p. 191-202Article in journal (Refereed)
    Abstract [en]

    Introduction

    The health of a community depends on the health of its individuals; therefore, individual health behaviour can implicitly affect the health of the entire community. This is particularly evident in the case of infectious diseases. Because the level of prosociality in a community might determine the effectiveness of health programmes, prosocial behaviour may be a crucial disease-control resource. This study aimed to extend the literature on prosociality and investigate the role of altruism in antibiotic decision making.

    Methods

    A discrete choice experiment was conducted to assess the influence of altruism on the general public’s preferences regarding antibiotic treatment options. The survey was completed by 378 Swedes. Latent class analysis models were used to estimate antibiotic treatment characteristics and preference heterogeneity. A three-class model resulted in the best model fit, and altruism significantly impacted preference heterogeneity.

    Results

    Our findings suggest that people with higher altruism levels had more pronounced preferences for treatment options with lower contributions to antibiotic resistance and a lower likelihood of treatment failure. Furthermore, altruism was statistically significantly associated with sex, education, and health literacy.

    Conclusions

    Antibiotic awareness, trust in healthcare systems, and non-discriminatory priority setting appear to be structural elements conducive to judicious and prosocial antibiotic behaviour. This study suggests that prosocial messages could help to decrease the demand for antibiotic treatments.

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  • 16.
    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.
    Nihlén Fahlquist, Jessica
    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.
    Individual moral responsibility for antibiotic resistance2022In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 36, no 1, p. 3-9Article in journal (Refereed)
    Abstract [en]

    Antibiotic resistance (AR) is a major threat to public health and healthcare worldwide. In this article, we analyse and discuss the claim that taking actions to minimize AR is everyone's responsibility, focusing on individual moral responsibility. This should not be merely interpreted as a function of knowledge of AR and the proper use of antibiotics. Instead, we suggest a circumstantial account of individual responsibility for AR, where individuals do or do not engage in judicious antibiotic behaviour with different degrees of voluntariness. Furthermore, we suggest a notion of responsibility as a virtue, in which individuals have the opportunity to develop a sensitivity towards the AR theme and, consequently, are capable of engaging, actively and voluntarily, in judicious antibiotic behaviour. The development of such sensitivity depends on the creation of adequate circumstances, that is individual capacities and availability of resources.

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  • 17.
    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.
    Nilsson, Elin
    Nordvall, Anna-Carin
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Business Studies.
    Oljans, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, SWEDESD - Sustainability Learning and Research Centre.
    The Status Quo Problem and the Role of Consumers Against Antimicrobial Resistance2022In: Frontiers in Sustainable Food Systems, E-ISSN 2571-581X, Vol. 6, article id 834022Article in journal (Refereed)
    Abstract [en]

    Antimicrobial resistance occurs when microorganisms survive exposure and proliferate in the presence of therapeutic levels of antimicrobial drugs. Because antimicrobial resistance is increasing, it is vital to encourage consumers to change and adopt smarter antibiotic behaviour. Despite World Health Organization's efforts to combat antibiotic resistance and their emphasis on the importance of public involvement, the role of consumers has been overlooked. The manifold responsibility for antibiotic resistance extends across different actors, including food retailers and consumers. Given this shared responsibility, a blame game arises and no action occurs. To overcome this status quo situation, we draw attention to the potential role of individual responsibility and social pressure to encourage consumers to adopt smart antibiotic behaviour but also to empower them. Conditions must be put in place to enable consumers' critical evaluation of the health-related and ethical aspects of their food choices. Such behaviour can be facilitated using digital innovations to support informed choices, in store and online.

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  • 18.
    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.
    Oljans, Emma
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, SWEDESD - Sustainability Learning and Research Centre.
    Hassan, Tazrin
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Informatics and Media.
    Horikx, Lotte
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Business Studies.
    Nordvall, Anna-Carin
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Business Studies.
    Consumer behaviour and antibiotic resistance2021In: Managing Antimicrobial Resistance Through Behavior Change, March 2021: Uppsala Health Summit Post-Conference Briefs, 2021, p. 13-14Conference paper (Other academic)
  • 19.
    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, p. 309-325Article 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.

  • 20.
    Andersson, Christina
    et al.
    Karolinska Inst, Solna, Sweden..
    Bergsten, Katja
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Lilliengren, Peter
    Ersta Sköndal Bräcke Univ Coll, Stockholm, Sweden..
    Norbäck, Kajsa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rask, Karin
    Uppsala Universitet, Uppsala, Sweden..
    Einhorn, Stefan
    Karolinska Inst, Dept Oncol Pathol, Stockholm, Sweden..
    Osika, Walter
    Karolinska Inst, Dept Clin Neurosci, Ctr Psychiat Res, Stockholm, Sweden..
    The effectiveness of smartphone compassion training on stress among Swedish university students: A pilot randomized trial2021In: Journal of Clinical Psychology, ISSN 0021-9762, E-ISSN 1097-4679, Vol. 77, no 4, p. 927-945Article in journal (Refereed)
    Abstract [en]

    Objective: To investigate the effects of a 6-week smartphone compassion training intervention on mental health.

    Method: Fifty-seven Swedish university students (mean age = 25, SD = 5) reporting high levels of stress were randomized to compassion training (n = 23), mindfulness (n = 19), or waitlist (n = 15).

    Result: Multilevel models indicated that both compassion and mindfulness training increased self-compassion compared to the waitlist, while only compassion significantly reduced stress. Between-group effect sizes for compassion compared to waitlist were large for both self-compassion (d = 1.61) and stress (d = 0.94). Compassion and mindfulness did not differ significantly, but effect sizes were in favor of compassion. Secondary outcomes indicated positive effects on emotional awareness, while no effect was found for global psychological distress.

    Conclusions: Our results suggest that compassion training via a smartphone application can improve self-compassion and reduce stress among university students. Future studies in larger clinical samples are warranted.

  • 21.
    Angelov, Nikolay
    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. Uppsala University, Units outside the University, The Institute for Evaluation of Labour Market and Education Policy (IFAU).
    Eliason, Marcus
    Uppsala University, Units outside the University, The Institute for Evaluation of Labour Market and Education Policy (IFAU).
    The Differential Earnings and Income Effects of Involuntary Job Loss on Workers with Disabilities: Evidence from Sweden2016In: Labour, ISSN 1121-7081, E-ISSN 1467-9914, Vol. 30, no 2, p. 213-233Article in journal (Refereed)
    Abstract [en]

    People with disabilities are consistently found to face considerable difficulties in the labour market. In this study we investigated whether their earnings and income trajectories are more adversely affected in case of involuntary job loss. Earnings of those with and without disabilities began to diverge already several years prior to job loss because of larger incidence of sickness. Following job loss much more job losers with disabilities became disability retirees resulting in a considerable and seemingly permanent earnings differential. However, larger uptake of public social insurances among job losers with disabilities resulted in a much smaller income differential.

  • 22.
    Angelov, Nikolay
    et al.
    Uppsala University, Units outside the University, The Institute for Evaluation of Labour Market and Education Policy (IFAU). Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Johansson, Per
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics. Uppsala University, Units outside the University, The Institute for Evaluation of Labour Market and Education Policy (IFAU).
    Lindahl, Erica
    Uppsala University, Units outside the University, The Institute for Evaluation of Labour Market and Education Policy (IFAU).
    Parenthood and the Gender Gap in Pay2016In: Journal of Labor Economics, ISSN 0734-306X, E-ISSN 1537-5307, ISSN ´, Vol. 34, no 3, p. 545-579Article in journal (Refereed)
    Abstract [en]

    We compare the income and wage trajectories of women to those of their male partners before and after parenthood. Focusing on the within-couple gap allows us to control for both observed and unobserved attributes of the spouse and to estimate both short-and long-term effects of entering parenthood. We find that 15 years after the first child has been born, the male-female gender gaps in income and wages have increased by 32 and 10 percentage points, respectively. In line with a collective labor supply model, the magnitude of these effects depends on counterfactual relative incomes or wages within the family.

  • 23. Appelros, Erica
    et al.
    Eriksson, StefanUppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.Stenqvist, Catharina
    Makt och religion i könsskilda världar: religionsfilosofiska perspektiv2003Collection (editor) (Other academic)
  • 24. Araya, Ricardo
    et al.
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rojas, Graciela
    Fritsch, Rosemarie
    Simon, Greg
    Cost-effectiveness of a primary care treatment program for depression in low-income women in Santiago, Chile.2006In: American Journal of Psychiatry, ISSN 0002-953X, E-ISSN 1535-7228, Vol. 163, no 8, p. 1379-87Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The authors compared the incremental cost-effectiveness of a stepped-care, multicomponent program with usual care for the treatment of depressed women in primary care in Santiago, Chile.

    METHOD: A cost-effectiveness study was conducted of a previous randomized controlled trial involving 240 eligible women with DSM-IV major depression who were selected from a consecutive sample of adult women attending primary care clinics. The patients were randomly allocated to usual care or a multicomponent stepped-care program led by a nonmedical health care worker. Depression-free days and health care costs derived from local sources were assessed after 3 and 6 months. A health service perspective was used in the economic analysis.

    RESULTS: Complete data were determined for 80% of the randomly assigned patients. After we adjusted for initial severity, women receiving the stepped-care program had a mean of 50 additional depression-free days over 6 months relative to patients allocated to usual care. The stepped-care program was marginally more expensive than usual care (an extra 216 Chilean pesos per depression-free day). There was a 90% probability that the incremental cost of obtaining an extra depression-free day with the intervention would not exceed 300 pesos (1.04 US dollars).

    CONCLUSIONS: The stepped-care program was significantly more effective and marginally more expensive than usual care for the treatment of depressed women in primary care. Small investments to improve depression appear to yield larger gains in poorer environments. Simple and inexpensive treatment programs tested in developing countries might provide good study models for developed countries.

  • 25.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    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. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Development and evaluation of a questionnaire for measuring patient views of involvement in myocardial infarction care2008In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 7, no 3, p. 229-238Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Patients' involvement in their healthcare has been associated with improved treatment outcomes in chronic illness. Less is known about the affects of patient involvement on the outcomes of acute illness, such as myocardial infarction. A better understanding of patients' views and behaviour during hospitalization might improve clinical practice and enhance patient involvement.

    AIM

    The aim of this study was to develop and evaluate a questionnaire for measuring patients' perceptions of their involvement during hospitalization for myocardial infarction care.

    METHODS

    Focus groups with myocardial infarction patients provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among myocardial infarction patients at eleven Swedish hospitals.

    RESULTS

    The questionnaire demonstrated good validity and reliability, with six factors measuring patient views and behaviour regarding involvement.

    CONCLUSION

    The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of patients regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of patient-staff interaction that need improvement. Pinpointing such areas may lead to improved patient involvement, satisfaction with care, and treatment outcomes.

  • 26.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    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.
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Staff views and behaviour regarding patient involvement in myocardial infarction care: development and evaluation of a questionnaire2008In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 7, no 1, p. 27-35Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Healthcare legislation in several nations now dictates the responsibility of health care professionals to involve patients in decisions concerning care and treatment. However, few studies have examined the impact of patient involvement on the work of health care professionals. A better understanding of staff views and behaviour might enhance patient involvement.

    AIM

    The aim of this study was to develop and validate a questionnaire for measuring views and behaviour regarding patient involvement among physicians and nursing staff caring for patients with myocardial infarction.

    METHODS

    Focus groups among cardiology staff provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among cardiology staff at twelve Swedish hospitals.

    RESULTS

    The questionnaire demonstrated good validity and reliability, with two factors measuring staff views and four measuring behaviour.

    CONCLUSION

    The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of physicians and nursing staff regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of staff-patient interaction that need improvement, as well as implications of patient involvement for the work of each professional group on cardiology wards.

  • 27.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    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. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lindahl, Bertil
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Spångberg, Kalle
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Wallentin, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Wang, Yun
    Ager, Joel
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Is patient involvement during hospitalization for acute myocardial infarction associated with post-discharge treatment outcome?: an exploratory study2010In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 13, no 3, p. 298-311Article in journal (Refereed)
    Abstract [en]

    Objective To investigate whether patient involvement during hospitalization for acute myocardial infarction (MI) was associated with health and behavioural outcomes 6–10 weeks after hospital discharge.

    Background Patient involvement has been associated with improved health outcomes in chronic disease, but less research has focused on the effects of patient involvement in acute conditions, such as MI.

    Design Self-administered questionnaire study. Questionnaire results were run against medical outcome data in a national database of cardiac patients.

    Setting and participants Cardiac patients (n = 591) on their first follow-up visit after hospitalization for MI at 11 Swedish hospitals.

    Main outcome measures Patient ratings of three questionnaire scales related to involvement; cardiovascular symptoms, medication compliance, participation in cardiac rehabilitation, and achievement of secondary preventive goals.

    Results More positive patient ratings of involvement were significantly associated with fewer cardiovascular symptoms 6–10 weeks after hospital discharge. In contrast, patients who attended cardiac rehabilitation and achieved the goals for smoking cessation and systolic blood pressure were significantly less satisfied with their involvement. No association was found between involvement ratings and medication compliance.

    Conclusion This study represents a first attempt to examine associations between patient involvement in the acute phase of illness and short-term health outcomes. Some significant associations between involvement and health and behavioural outcomes after acute MI were found. However, higher involvement ratings were not consistently associated with more desirable outcomes, and involvement during hospitalization was not associated with MI patient health and behaviour 6–10 weeks after hospital discharge to the extent hypothesized.

  • 28.
    Arvidsson, Per I.
    et al.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Karolinska institutet.
    Domeij, Bengt
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    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.
    Landegren, Ulf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    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.
    Ullerås, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Öppenheten förstör chansen till patent2015In: Svenska dagbladet, ISSN 2001-3868Article in journal (Other (popular science, discussion, etc.))
  • 29.
    Atry, Ashkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Transforming the Doping Culture: Whose responsibility, what responsibility?2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The doping culture represents an issue for sport and for society. Normative debates on doping have been mainly concerned with questions of the justifiability of doping. The practice of assigning responsibility for doping behaviour has chiefly been individual-based, focusing mainly on the individual athlete’s doping behaviour. The overarching aim of this thesis is to investigate the relevance and the importance of the ideas of responsibility in relation to ethical debates on doping. The more specific aim is to examine the possibility of broadening the scope of responsibility beyond the individual athlete, and to sketch a theoretical framework within which this expansion could be accommodated. In the first study, it is argued that bioethicists have a moral/professional responsibility to start out from a realistic and up-to-date view of genetics in ethical debates on gene doping, and that good bioethics requires good empirics. In study 2, the role played by affective processes in influencing athletes’ attitudes towards doping behaviour is investigated, both on an individual and on a collective level. It is concluded that an exclusive focus on individual-level rule violation and sanctions may entail overlooking the greater social picture and would prove to be ineffective in the long term. In study 3, the common doping-is-cheating arguments are examined and it is argued that they fail to capture vital features of people’s moral responses to doping behaviour. An alternative account of cheating in sport is presented in terms of failure to manifest good will and respect. It is concluded that putting cheating in the broader context of human interpersonal relationships makes evident the need to broaden the scope of moral responsibility and agency beyond the individual athlete. In study 4, the particular case of assigning responsibility for doping to sports physicians is used to examine the current individual-based approach to responsibility. This approach underestimates the scope of the responsibility by leaving out a range of other actors from the discourse of responsibility. The central conclusion of the thesis is that transforming the current doping culture requires broadening the scope of responsibility to include individuals and groups of individuals other than the athletes themselves.  

    List of papers
    1. Gene Doping and the Responsibility of Bioethicists
    Open this publication in new window or tab >>Gene Doping and the Responsibility of Bioethicists
    2011 (English)In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 5, no 2, p. 149-160Article in journal (Refereed) Published
    Abstract [en]

    In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.

    Keywords
    genetic enhancement; gene-doping; sport
    National Category
    Ethics
    Research subject
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206595 (URN)10.1080/17511321.2010.536960 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    2. Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport
    Open this publication in new window or tab >>Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport
    2012 (English)In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 6, no 4, p. 467-479Article in journal (Refereed) Published
    Abstract [en]

    Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes’ individual-level attitudes. We conclude that one-sided focus on individual rule- violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education.

    Keywords
    rule-violating behaviour, emotion, emotion culture, moral response, moral psychology
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206599 (URN)10.1080/17511321.2012.739194 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    3. Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping
    Open this publication in new window or tab >>Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping
    2013 (English)In: Physical Culture and Sport. Studies and Research, ISSN 2081-2221, E-ISSN 1899-4849, Vol. 59, no 1, p. 21-32Article in journal (Refereed) Published
    Abstract [en]

    One of the most common arguments in the discussion on doping is that it represents a form of cheating. In this paper, it is argued that common doping-is-cheating arguments based on notions of rule-violation and unfair advantage are inadequate, since they treat cheating as distinct from the structure and the logic of competitive sport. An alternative approach to cheating in sport as regards performance enhancement will be offered based on the ethics of participation in interpersonal relationships. This participatory perspective points towards the need to broaden our conception of agency and moral responsibility in relation to doping, beyond the notion of the individual “drug-cheat” who acts in a vacuum.

     

    Keywords
    Doping, Cheating, unfair advantage, rule violation, interpersonal relationships
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206601 (URN)10.2478/pcssr-2013-0020 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    4. Doping and The Participatory Responsibility of Sports Physicians
    Open this publication in new window or tab >>Doping and The Participatory Responsibility of Sports Physicians
    2013 (English)In: Article in journal (Other academic) Submitted
    Abstract [en]

    In this paper it will be argued that notwithstanding the need for more clear regulative measures in relation to sports physicians’ doping behaviour, the predominant medical/legalistic approach in/by itself is not sufficient, and fails in doing what sports anti-doping authorities whish it to do, i.e., to define and to assign sports physicians’ responsibility in an adequate way. High-performance sport is a form of social practice and sports physicians are an integrated part of the practice. In dealing with such a large-scale social process as high-performance sport, the above approach is lacking since it (a) proceeds from a conception of responsibility which limits the scope of responsibility in athletic settings, and (b) overlooks social aspects of responsibility and responsibility-attributing processes. Furthermore, it will be maintained that responsibility is relational, and as such, it is chiefly created and assigned within the social practice, rather than imposed from authoritative sources that are external to the practice itself. It will be concluded that sports physicians, given their position in relation to athletes and sports management, should actively assume prospective responsibilities beyond those pre- defined responsibilities that are expressed in rules, regulations and policies issued by sports’ governing bodies.

    Keywords
    Sports Physician, Doping, Responsibility
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206605 (URN)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2024-04-18
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  • 30.
    Atry, Ashkan
    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.
    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.
    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.
    Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport2012In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 6, no 4, p. 467-479Article in journal (Refereed)
    Abstract [en]

    Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes’ individual-level attitudes. We conclude that one-sided focus on individual rule- violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education.

  • 31.
    Atry, Ashkan
    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.
    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.
    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.
    Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping2013In: Physical Culture and Sport. Studies and Research, ISSN 2081-2221, E-ISSN 1899-4849, Vol. 59, no 1, p. 21-32Article in journal (Refereed)
    Abstract [en]

    One of the most common arguments in the discussion on doping is that it represents a form of cheating. In this paper, it is argued that common doping-is-cheating arguments based on notions of rule-violation and unfair advantage are inadequate, since they treat cheating as distinct from the structure and the logic of competitive sport. An alternative approach to cheating in sport as regards performance enhancement will be offered based on the ethics of participation in interpersonal relationships. This participatory perspective points towards the need to broaden our conception of agency and moral responsibility in relation to doping, beyond the notion of the individual “drug-cheat” who acts in a vacuum.

     

  • 32.
    Atry, Ashkan
    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.
    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.
    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.
    Doping and The Participatory Responsibility of Sports Physicians2013In: Article in journal (Other academic)
    Abstract [en]

    In this paper it will be argued that notwithstanding the need for more clear regulative measures in relation to sports physicians’ doping behaviour, the predominant medical/legalistic approach in/by itself is not sufficient, and fails in doing what sports anti-doping authorities whish it to do, i.e., to define and to assign sports physicians’ responsibility in an adequate way. High-performance sport is a form of social practice and sports physicians are an integrated part of the practice. In dealing with such a large-scale social process as high-performance sport, the above approach is lacking since it (a) proceeds from a conception of responsibility which limits the scope of responsibility in athletic settings, and (b) overlooks social aspects of responsibility and responsibility-attributing processes. Furthermore, it will be maintained that responsibility is relational, and as such, it is chiefly created and assigned within the social practice, rather than imposed from authoritative sources that are external to the practice itself. It will be concluded that sports physicians, given their position in relation to athletes and sports management, should actively assume prospective responsibilities beyond those pre- defined responsibilities that are expressed in rules, regulations and policies issued by sports’ governing bodies.

  • 33.
    Atry, Ashkan
    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.
    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.
    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.
    Gene Doping and the Responsibility of Bioethicists2011In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 5, no 2, p. 149-160Article in journal (Refereed)
    Abstract [en]

    In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.

  • 34.
    Ballantyne, Angela
    et al.
    University of Otago Wellington, Bioeth, Wellington, New Zealand.
    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.
    Research ethics revised: The new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context2019In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 33, no 3, p. 310-311Article in journal (Other academic)
  • 35.
    Bayliss, Kerin
    et al.
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Raza, Karim
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England..
    Falahee, Marie
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    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.
    Starling, Bella
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Stack, Rebecca
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Nottingham Trent Univ, Sch Social Sci, Div Psychol, Nottingham, England..
    Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 167-189Article in journal (Refereed)
    Abstract [en]

    Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people's perceptions of predictive testing.

    Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing.

    Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes.

    Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.

  • 36. 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, article id 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.

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  • 37. Bengtsson, Ulrika
    et al.
    Kasperowski, Dick
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kjellgren, Karin
    Developing an interactive mobile phone self-report system for self-management of hypertension. Part 1: Patient and professional perspectives2014In: Blood Pressure, ISSN 0803-7051, E-ISSN 1651-1999, Vol. 23, no 5, p. 288-295Article in journal (Refereed)
    Abstract [en]

    Low adherence remains a struggle in hypertension management, despite improvement efforts. Presuming that increased patient participation is a possible approach, we collaborated with patients and healthcare professionals to design a self-report system to support self-management. The study aimed to explore and describe relevant aspects of hypertension and hypertension treatment, for use in the development of an interactive mobile phone self-report system. It further aimed to suggest which clinical measures, lifestyle measures, symptoms and side-effects of treatment would be meaningful to include in such a system. Five focus group interviews were performed with 15 patients and 12 healthcare professionals, and data was analysed using thematic analysis. Patients suggested trust, a good relationship with caregivers, and well-being as important aspects of hypertension self-management. Furthermore, they regarded blood pressure, dizziness, stress, headache and tiredness as important outcomes to include. Patients sought to understand interconnections between symptoms and variations in blood pressure, whilst healthcare professionals doubted patients' ability to do so. Healthcare professionals emphasized accessibility, clear and consistent counselling, complication prevention and educational efforts. The study presents aspects of importance for follow-up to understand the interplay between blood pressure and daily life experiences for patients with hypertension.

  • 38. Bengtsson, Ulrika
    et al.
    Kjellgren, Karin
    Hoefer, Stefan
    Taft, Charles
    Ring, Lena
    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 an interactive mobile phone self-report system for self-management of hypertension. Part 2: Content validity and usability2014In: Blood Pressure, ISSN 0803-7051, E-ISSN 1651-1999, Vol. 23, no 5, p. 296-306Article in journal (Refereed)
    Abstract [en]

    Self-management support tools using technology may improve adherence to hypertension treatment. There is a need for user-friendly tools facilitating patients' understanding of the interconnections between blood pressure, wellbeing and lifestyle. This study aimed to examine comprehension, comprehensiveness and relevance of items, and further to evaluate the usability and reliability of an interactive hypertension-specifi c mobile phone self-report system. Areas important in supporting self-management and candidate items were derived from five focus group interviews with patients and healthcare professionals (n = 27), supplemented by a literature review. Items and response formats were drafted to meet specifications for mobile phone administration and were integrated into a mobile phone data-capture system. Content validity and usability were assessed iteratively in four rounds of cognitive interviews with patients (n = 21) and healthcare professionals (n = 4). Reliability was examined using a test-retest. Focus group analyses yielded six areas covered by 16 items. The cognitive interviews showed satisfactory item comprehension, relevance and coverage; however, one item was added. The mobile phone self-report system was reliable and perceived easy to use. The mobile phone self-report system appears efficiently to capture information relevant in patients' self-management of hypertension. Future studies need to evaluate the effectiveness of this tool in improving self-management of hypertension in clinical practice.

  • 39. Bergström, G
    et al.
    Berglund, G
    Blomberg, A
    Brandberg, J
    Engström, G
    Engvall, J
    Eriksson, M
    de Faire, U
    Flinck, A
    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.
    Hedblad, B
    Hjelmgren, O
    Janson, Christer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Jernberg, T
    Johnsson, Å
    Johansson, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Lind, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Löfdahl, C-G
    Melander, O
    Östgren, C J
    Persson, A
    Persson, M
    Sandström, A
    Schmidt, C
    Söderberg, S
    Sundström, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Toren, K
    Waldenström, A
    Wedel, H
    Vikgren, J
    Fagerberg, B
    Rosengren, A
    The Swedish CArdioPulmonary BioImage Study: objectives and design2015In: Journal of Internal Medicine, ISSN 0954-6820, E-ISSN 1365-2796, Vol. 278, no 6, p. 645-659Article in journal (Refereed)
    Abstract [en]

    Cardiopulmonary diseases are major causes of death worldwide, but currently recommended strategies for diagnosis and prevention may be outdated because of recent changes in risk factor patterns. The Swedish CArdioPulmonarybioImage Study (SCAPIS) combines the use of new imaging technologies, advances in large-scale 'omics' and epidemiological analyses to extensively characterize a Swedish cohort of 30 000 men and women aged between 50 and 64 years. The information obtained will be used to improve risk prediction of cardiopulmonary diseases and optimize the ability to study disease mechanisms. A comprehensive pilot study in 1111 individuals, which was completed in 2012, demonstrated the feasibility and financial and ethical consequences of SCAPIS. Recruitment to the national, multicentre study has recently started.

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    fulltext
  • 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, p. 89-105Conference 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.
    Beyermann, Alexandra
    et al.
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Asp, Margareta
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University.
    Söderman, Mirkka
    Division of Caring Science, School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna, Sweden.
    Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study2023In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2238984Article in journal (Refereed)
    Abstract [en]

    Purpose: Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

    Methods: A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis.

    Results: The results emerged in the following categories:” To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;” To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”.

    Conclusions: RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and their families.

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  • 42.
    Biasiotto, Roberta
    et al.
    Univ Lubeck, Affiliated Inst, Eurac Res, Inst Biomed, Bolzano, Italy..
    Pramstaller, Peter P.
    Univ Lubeck, Affiliated Inst, Eurac Res, Inst Biomed, Bolzano, Italy..
    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. Univ Lubeck, Affiliated Inst, Eurac Res, Inst Biomed, Bolzano, Italy..
    The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication2021In: BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, ISSN 2284-4503, no 1, p. 277-287Article in journal (Refereed)
    Abstract [en]

    In biobanking and genomics research, data and samples are stored for long time and used in further studies, which may not be sufficiently specified or foreseen at the time of the initial consent. The dynamic consent of the CHRIS study integrates broad research aims, specific oversight and governance mechanisms, and continuous communication with participants, and allows nuanced choices to be changed over time. With this paper, we describe the CHRIS dynamic consent, and illustrate, by discussing data sharing and ongoing consent in the CHRIS study, how dynamic consent can actualize an informed consent model that is suitable for biobanking and genomic research.

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  • 43. Biasiotto, Roberta
    et al.
    Viberg Johansson, Jennifer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Alemu, Melaku Birhanu
    Romano, Virginia
    Bentzen, Heidi Beate
    Kaye, Jane
    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.
    Blom, Johanna Maria Catharina
    Chassang, Gauthier
    Hallinan, Dara
    Jónsdóttir, Guðbjörg Andrea
    Monasterio Astobiza, Aníbal
    Rial-Sebbag, Emmanuelle
    Rodríguez-Arias, David
    Shah, Nisha
    Skovgaard, Lea
    Staunton, Ciara
    Tschigg, Katharina
    Veldwijk, Jorien
    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. Institute for Biomedicine (Affiliated Institute of the University of Lübeck), Eurac Research, Bolzano, Italy .
    Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.2023In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e47066Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level.

    OBJECTIVE: This study investigated public preferences for digital health data sharing.

    METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets.

    RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions.

    CONCLUSIONS: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.

  • 44. Bisol, Giovanni Destro
    et al.
    Anagnostou, Paolo
    Capocasa, Marco
    Bencivelli, Silvia
    Cerroni, Andrea
    Contreras, Jorge
    Enke, Neela
    Fantini, Bernardino
    Greco, Pietro
    Heeney, Catherine
    Luzi, Daniela
    Manghi, Paolo
    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.
    Molloy, Jennifer C.
    Parenti, Fabio
    Wicherts, Jelte M.
    Boulton, Geoffrey
    Perspectives on Open Science and scientific data sharing: an interdisciplinary workshop2014In: J ANTHROPOL SCI, ISSN 1827-4765, Vol. 92, p. 179-200Article in journal (Refereed)
    Abstract [en]

    Looking at Open Science and Open Data from a broad perspective. This is the idea behind "Scientific data sharing: an interdisciplinary workshop", an initiative designed to foster dialogue between scholars from different scientific domains which was organized by the Istituto Italiano di Antropologia in Anagni, Italy, 2-4 September 2013. We here report summaries of the presentations and discussions at the meeting. They deal with four sets of issues: (i) setting a common framework, a general discussion of open data principles, values and opportunities; (ii) insights into scientific practices, a view of the way in which the open data movement is developing in a variety of scientific domains (biology, psychology, epidemiology and archaeology); (iii) a case study of human genomics, which was a trail-blazer in data sharing, and which encapsulates the tension that can occur between large-scale data sharing and one of the boundaries of openness, the protection of individual data; (iv) open science and the public, based on a round table discussion about the public communication of science and the societal implications of open science. There were three proposals for the planning of further interdisciplinary initiatives on open science. Firstly, there is a need to integrate top-down initiatives by governments, institutions and journals with bottom-up approaches from the scientific community. Secondly, more should be done to popularize the societal benefits of open science, not only in providing the evidence needed by citizens to draw their own conclusions on scientific issues that are of concern to them, but also explaining the direct benefits of data sharing in areas such as the control of infectious disease. Finally, introducing arguments from social sciences and humanities in the educational dissemination of open data may help students become more profoundly engaged with Open Science and look at science from a broader perspective.

  • 45.
    Bjelobaba, Sonja
    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 Languages, Department of Modern Languages, Slavic Languages.
    Academic Integrity Skill Development amongst the Faculty at a Swedish University2018In: Towards Consistency and Transparency in Academic Integrity / [ed] Salim Razı, Irene Glendinning and Tomáš Foltýnek, Berlin: Peter Lang Publishing Group, 2018, p. 131-146Chapter in book (Refereed)
    Abstract [en]

    When we talk about the need for education in academic integrity, the implied recipient of such education is commonly students. This paper argues that to strengthen academic integrity, it is crucial to work with the faculty as well. Since 2014 a unit for pedagogical development at a Swedish university has conducted a project with the aim of enhancing knowledge of academic integrity. In 2014, a survey on academic integrity was sent out and the results were used to develop a new systematic holistic approach with several new measures to promote academic integrity. The aim of these measures regarding faculty was to strengthen faculty members' knowledge on academic integrity, to remind them of their duty to report cases of suspected misconduct, as well as to provide different tools and ideas to improve the academic integrity of their students. The undertaken measures have led to a noticeable increase in reported cases of plagiarism. In 2018, a follow-up survey was sent out. The present paper discusses this systematic approach to promote academic integrity, the measures taken, and the results of the surveys.

  • 46.
    Bjelobaba, Sonja
    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 Languages, Department of Modern Languages, Slavic Languages.
    Academic Integrity Teacher Training: Preventive Pedagogical Practices on the Course Level2020In: Integrity in Education for Future Happiness / [ed] Zeenath Reza Khan, Christopher Hill, Tomáš Foltýnek, Brno: Mendel University in Brno , 2020, p. 9-18Chapter in book (Refereed)
    Abstract [en]

    More often than not, academic integrity as a discipline is defined by stating what it is not. Instead of focusing on what we want our students to do, we tell them that they should not cheat, plagiarize, collude, falsify or fabricate data, or engage in contract cheating. When defined in this way, academic integrity focuses on corrections of students’ behaviour, detection, and punishment, still generally managing to avoid explaining to students what we want them to do instead. Academic integrity can – and should – be defined in other ways, as a set of positive values or an agreement with ethical and professional principles, standards and practices that involve the whole institution. Such a change in the definition inevitably changes our teaching of academic integrity: instead of correcting students’ behaviour, different methods of the preventive and pedagogical promotion of academic integrity can be explored. One of them is an integration of academic integrity across the curriculum thus permeating all higher education. In order to achieve that, educational measures should not only be aimed at students, but to their teachers as well. In this paper a structure of an academic integrity teacher training workshop is presented with a focus on the integration of academic integrity in the curriculum through constructive alignment and the examples of different preventive pedagogical practices.

  • 47.
    Bjelobaba, Sonja
    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 Languages, Department of Modern Languages, Slavic Languages.
    Deterring cheating using a complex assessment design: A case study2021In: The Literacy Trek. Journal of literacy and language studies, E-ISSN 2602-3768, Vol. 7, no 1, p. 55-77Article in journal (Refereed)
    Abstract [en]

    Attempts to translate written examinations normally conducted in a lecture hall to an online environment during emergency remote learning in response to COVID-19 have not proved entirely successful, and have led to a sharp increase in cases of suspected misconduct. This paper describes a case study which gives insights on the relationship between assessment design and academic integrity: Is it possible to deter students from cheating by means of assessment design? Previous research does promote certain assessment types, but also indicates that there is no single assessment type that students think is impossible to cheat on. The solution proposed in this paper is therefore to add complexity to the mixture. An alternative complex assessment design comprising several steps is introduced and exemplified by an assessment procedure piloted in a grammar course for preservice language teachers in mother tongue tuition. The design promotes academic integrity, signature pedagogy, student-centred learning, and collaboration within a community of practice in an online setting.

    Download full text (pdf)
    Deterring cheating using a complex assessment design:
  • 48.
    Bjelobaba, Sonja
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Modern Languages, Slavic Languages.
    Cronqvist, Marita
    University of Borås, Borås, Sweden.
    Preparing Preservice Teachers to Teach Academic Integrity and Ethics2022In: Ethics and Integrity in Teacher Education / [ed] Eaton, Sarah Elaine; Khan, Zeenath Reza, Springer International Publishing , 2022, p. 43-54Chapter in book (Refereed)
    Abstract [en]

    The inclusion of ethics and integrity in preservice teacher education can refer to several contexts. The first context is academic integrity for preservice teachers with a focus on incorporating academic integrity in their own studies within higher education, as well as teaching them different components of academic writing including proper referencing techniques to enable them to write their own academic texts. The second context is developing the professional ethics of these future teachers, as a lived practice as well as through ethical codes. The third context is giving preservice teachers pedagogical and didactic knowledge and instruments to teach academic integrity and ethics to their future students in primary and secondary education, in order to prepare them for their own higher education endeavours. While attention is paid to the first and the second context, the third one is only rarely treated as a part of preservice teacher education as it is usually assumed that the first context is indirectly giving enough preparation for a preservice teacher to subsequently mediate ethics and integrity to his or her students. In this paper, we argue that this assumption is problematic and propose the inclusion of the third context – preparing future teachers to teach academic integrity and ethics – in preservice teacher education. Although the chapter uses the preservice teacher education in Sweden as a starting point, the three ethical contexts that are identified are not limited to any particular national preservice education system but are relevant in other similar frameworks as well.

  • 49.
    Bjelobaba, Sonja
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Modern Languages, Slavic Languages.
    Foltýnek, TomášMasaryk University, Brno, Czech Republic.Glendinning, IreneCoventry University, Coventry, UK.Krásničan, VeronikaMendel University in Brno, Brno, Czech Republic.Henek Dlabolová, DitaEuropean Network for Academic Integrity, Brno, Czech Republic.
    Academic Integrity: Broadening Practices, Technologies, and the Role of Students: Proceedings from the European Conference on Academic Integrity and Plagiarism 20212022Conference proceedings (editor) (Refereed)
    Abstract [en]

    This book aims to broaden the horizons of academic integrity by discussing novel practices and technologies, and the importance of student involvement in building a culture of academic integrity. Examples are the outreach efforts towards a range of non-educational organisations, the exploration and comparison of ethical policies and actions in different institutions, and the improvement of student responses in research on sensitive topics.

    It explores a range of scenarios and strategies adopted in different parts of the world during the COVID-19 pandemic, and addresses new technological advances for investigating types of academic misconduct that are difficult to find, including translation plagiarism, contract cheating, the usage of proctoring systems, and the innovative use of data mining to detect cheating on online quizzes.

    The work shows how working with students is an essential part of the fight against academic misconduct. The student voice can be a powerful source of motivation for students, but educators also need to understand their perspectives, especially regarding such an important topic as academic integrity.

  • 50. Bjugn, Roger
    et al.
    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.
    Hostmaelingen, Njal
    Simeon-Dubach, Daniel
    Petrini, Carlo
    What Are Some of the ELSI Challenges of International Collaborations Involving Biobanks, Global Sample Collection, and Genomic Data Sharing and How Should They Be Addressed?2015In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 13, no 2, p. 70-71Article in journal (Refereed)
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