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  • 1.
    Aamodt, Ina Thon
    et al.
    Oslo Univ Hosp, Norway; Univ Oslo, Norway; Lovisenberg Diaconal Univ Coll, Norway.
    Strömberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart Center, Department of Cardiology in Linköping.
    Helleso, Ragnhild
    Univ Oslo, Norway.
    Jaarsma, Tiny
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
    Lie, Irene
    Oslo Univ Hosp, Norway.
    Tools to Support Self-Care Monitoring at Home: Perspectives of Patients with Heart Failure2020In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 17, no 23, article id 8916Article in journal (Refereed)
    Abstract [en]

    Self-care monitoring at home can be a challenge for patients with heart failure (HF). Tools that leverage information and communication technology (ICT), comprise medical devices, or have written material may support their efforts at home. The aim of this study was to describe HF patients experiences and their prioritization of tools that support, or could support, self-care monitoring at home. A descriptive qualitative design employing semi-structured interviews was used with HF patients living at home and attending an HF outpatient clinic in Norway. We used a deductive analysis approach, using the concept of self-care monitoring with ICT tools, paper-based tools, medical devices, and tools to consult with healthcare professionals (HCPs) as the categorization matrix. Nineteen HF patients with a mean age of 64 years participated. ICT tools are used by individual participants to identify changes in their HF symptoms, but are not available by healthcare services. Paper-based tools, medical devices, and face-to-face consultation with healthcare professionals are traditional tools that are available and used by individual participants. HF patients use traditional and ICT tools to support recognizing, identifying, and responding to HF symptoms at home, suggesting that they could be used if they are available and supplemented by in-person consultation with HCPs.

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  • 2.
    Abdulcadir, Jasmine
    et al.
    Univ Geneva, Univ Hosp Geneva, Ob Gyn Emergency Unit, Geneva, Switzerland; Univ Geneva, Univ Hosp Geneva, FGM C Outpatient Clin, Geneva, Switzerland.
    Merli, Claudia
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of Cultural Anthropology and Ethnology.
    Warren, Nicole
    Johns Hopkins Univ, Sch Nursing, Baltimore, MD USA.
    Medically Unnecessary Genital Cutting and the Rights of the Child: Moving Toward Consensus2019In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 19, no 10, p. 17-28Article in journal (Other academic)
  • 3.
    Abelsson, Anna
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Willman, Anna
    Department of Health Sciences, Karlstad University, Karlstad, Sweden.
    Ethics and aesthetics in injection treatments with Botox and Filler2021In: Journal of Women & Aging, ISSN 0895-2841, E-ISSN 1540-7322, Vol. 33, no 6, p. 583-595Article in journal (Refereed)
    Abstract [en]

    The medical nature of esthetic treatments is confusing, as the boundaries between medicine and beauty are unclear. A person's autonomous decision is an indicator for esthetic treatments that will improve their self-image, self-esteem and appearance to others. Robust ethical consideration is therefore necessary for the medical esthetician in each meeting with the client. This study aimed to describe medical estheticians' perceptions of ethics and esthetics in injection treatments with Botox and Filler. The results are described in Understanding what different clients desire, Reaching a mutual understanding of expectations and possibilities and Taking responsibility for beauty.

  • 4.
    Agerström, Jens
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Psychology.
    Carlsson, Magnus
    Linnaeus University, School of Business and Economics, Department of Economics and Statistics.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Herlitz, Johan
    Sahlgrenska University Hospital, Sweden;University of Borås, Sweden.
    Rawshani, Araz
    University of Gothenburg, Sweden.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linnaeus University, Linnaeus Knowledge Environments, Sustainable Health. Region Kalmar County, Sweden.
    Israelsson, Johan
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital, Sweden.
    Treatment and survival following in-hospital cardiac arrest: does patient ethnicity matter?2022In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 21, no 4, p. 341-347Article in journal (Refereed)
    Abstract [en]

    Aims 

    Previous research on racial/ethnic disparities in relation to cardiac arrest has mainly focused on black vs. white disparities in the USA. The great majority of these studies concerns out-of-hospital cardiac arrest (OHCA). The current nationwide registry study aims to explore whether there are ethnic differences in treatment and survival following in-hospital cardiac arrest (IHCA), examining possible disparities towards Middle Eastern and African minorities in a European context.

    Methods and results

    In this retrospective registry study, 24 217 patients from the IHCA part of the Swedish Registry of Cardiopulmonary Resuscitation were included. Data on patient ethnicity were obtained from Statistics Sweden. Regression analysis was performed to assess the impact of ethnicity on cardiopulmonary resuscitation (CPR) delay, CPR duration, survival immediately after CPR, and the medical team’s reported satisfaction with the treatment. Middle Eastern and African patients were not treated significantly different compared to Nordic patients when controlling for hospital, year, age, sex, socioeconomic status, comorbidity, aetiology, and initial heart rhythm. Interestingly, we find that Middle Eastern patients were more likely to survive than Nordic patients (odds ratio = 1.52).

    Conclusion

    Overall, hospital staff do not appear to treat IHCA patients differently based on their ethnicity. Nevertheless, Middle Eastern patients are more likely to survive IHCA.

  • 5.
    Ahlberg, Beth Maina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, International Maternal and Child Health (IMCH).
    Njoroge, Kezia Muthoni
    School of Health, Community of Education Studies, Northumbria University, Newcastle upon Tyne, UK.
    'Not men enough to rule!': politicization of ethnicities and forcible circumcision of Luo men during the postelection violence in Kenya2013In: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 18, no 5, p. 454-468Article in journal (Refereed)
    Abstract [en]

    Background

    As a contribution to ongoing research addressing sexual violence in war and conflict situations in the Democratic Republic of Congo, Kenya and Rwanda, this paper argues that the way sexual violence intersects with other markers of identity, including ethnicity and class, is not clearly articulated. Male circumcision has been popularized, as a public health strategy for prevention of HIV transmission, although evidence of its efficacy is disputable and insufficient attention has been given to the social and cultural implications of male circumcision.

    Methods

    This paper draws from media reporting and the material supporting the prosecutor at the International Criminal Court case against four Kenyans accused of crimes against humanity, to explore the postelection violence, especially forcible male circumcision.

    Results

    During the postelection violence in Kenya, women were, as in other conflict situations, raped. In addition, men largely from the Luo ethnic group were forcibly circumcised. Male circumcision among the Gikuyu people is a rite of passage, but when forced upon the Luo men, it was also associated with cases of castration and other forms of genital mutilation. The aim appears to have been to humiliate and terrorize not just the individual men, but their entire communities. The paper examines male circumcision and questions why a ritual that has marked a life-course transition for inculcating ethical analysis of the self and others, became a tool of violence against men from an ethnic group where male circumcision is not a cultural practice.

    Conclusion

    The paper then reviews the persistence and change in the ritual and more specifically, how male circumcision has become, not just a sexual health risk, but, contrary to the emerging health discourse and more significantly, a politicized ethnic tool and a status symbol among the Gikuyu elite. In the view of the way male circumcision was perpetrated in Kenya, we argue it should be considered as sexual violence, with far-reaching consequences for men's physical and mental health.

  • 6.
    Ahlzen, Rolf
    Karlstad University, Faculty of Social and Life Sciences, Department of Health and Environmental Sciences.
    Illness as unhomelike being-in-the-world?: Phenomenology and medical practice2011In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 14, no 3, p. 323-331Article in journal (Refereed)
    Abstract [en]

    Scientific medicine has been successful by ways of an ever more detailed understanding and mastering of bodily functions and dysfunctions. Biomedical research promises new triumphs, but discontent with medical practice is all around. Since several decades this has been acknowledged and discussed. The philosophical traditions of phenomenology and hermeneutics have been proposed as promising ways to approach medical practice, by ways of a richer understanding of the meaning structures of health and illness. In 2000, Swedish philosopher Fredrik Svenaeus published a book where he proposes that the phenomenological hermeneutics of Martin Heidegger and also the reflections on health and illness of Hans-Georg Gadamer offer important ways to approach the nature of medicine. In particular, Svenaeus argues that the goal of medicine is to promote and restore health, and that health ought to be seen as "homelike being-in-the-world". Unhealth, illness, consequently should be understood as a situation where a person's "being-in-the-world" in characterized by that lack of the rhythm, balance and "tune" of everyday living that characterizes not "being at home". In this article, Svenaeus' position is briefly outlined. Questions are raised whether "unhomelikeness" is to be seen as a metaphor, and, if so, if it is a fruitful such. Furthermore, I discuss whether or not a discourse on health and illness in these terms may be misleading in a situation where the ontological presuppositions of Heidegger are lost out of sight and the popular understanding of health psychology predominates. I also approach the question whether Svenaeus' assumptions may inadvertently lead us to an unjustifiably broad understanding of the tasks of medicine. It is finally concluded that Svenaeus phenomenological and hermeneutical approach is both interesting and promising. There are, however, several questions that ought to be pursued further, and the step from philosophical analysis to everyday clinical discourse may be unexpectedly long and risky.

  • 7.
    Ahmed, Lawko
    et al.
    Medical School, University of Cyprus, Nicosia, Cyprus.
    Constantinidou, Anastasia
    Medical School, University of Cyprus, Nicosia, Cyprus.
    Chatzittofis, Andreas
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry. Medical School, University of Cyprus, Nicosia, Cyprus.
    Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review2023In: Frontiers in Medicine, E-ISSN 2296-858X, Vol. 10, article id 1215663Article, review/survey (Refereed)
    Abstract [en]

    Background: Precision medicine is growing due to technological advancements including next generation sequencing techniques and artificial intelligence. However, with the application of precision medicine many ethical and potential risks may emerge. Although, its benefits and potential harms are relevantly known to professional societies and practitioners, patients' attitudes toward these potential ethical risks are not well-known. The aim of this systematic review was to focus on patients' perspective on ethics and risks that may rise with the application of precision medicine.

    Methods: A systematic search was conducted on 4/1/2023 in the database of PubMed, for the period 1/1/2012 to 4/1/2023 identifying 914 articles. After initial screening, only 50 articles were found to be relevant. From these 50 articles, 24 articles were included in this systematic review, 2 articles were excluded as not in English language, 1 was a review, and 23 articles did not include enough relevant qualitative data regarding our research question to be included. All full texts were evaluated following PRISMA guidelines for reporting systematic reviews following the Joanna Briggs Institute criteria.

    Results: There were eight main themes emerging from the point of view of the patients regarding ethical concerns and risks of precision medicine: privacy and security of patient data, economic impact on the patients, possible harms of precision medicine including psychosocial harms, risk for discrimination of certain groups, risks in the process of acquiring informed consent, mistrust in the provider and in medical research, issues with the diagnostic accuracy of precision medicine and changes in the doctor-patient relationship.

    Conclusion: Ethical issues and potential risks are important for patients in relation to the applications of precision medicine and need to be addressed with patient education, dedicated research and official policies. Further research is needed for validation of the results and awareness of these findings can guide clinicians to understand and address patients concerns in clinical praxis.

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  • 8.
    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)
  • 9.
    Ambagtsheer, Frederike
    et al.
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Gunnarson, Martin
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    de Jong, Jessica
    Central Division of the National Police, the Netherlands.
    Lundin, Susanne
    Lund University.
    van Balen, Linde
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Orr, Zvika
    The Hebrew University of Jerusalem, Israel.
    Byström, Ingela
    Lund University.
    Weimar, Willem
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Trafficking in Human Beings for the Purpose of Organ Removal: A Case Study Report2016In: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Chapter in book (Other academic)
  • 10.
    Ambagtsheer, Frederike
    et al.
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Gunnarson, Martin
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    van Balen, Linde
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Ivanovski, Ninoslav
    University of St. Cyril and Methodius, Macedonia.
    Lundin, Susanne
    Lund University.
    Byström, Ingela
    Lund University.
    Weimar, Willem
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Organ Recipients who Paid for Kidney Transplantation abroad: A Report2016In: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Chapter in book (Other academic)
  • 11.
    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. 

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  • 12.
    Ancillotti, Mirko
    et al.
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Andersson, Dan I.
    Uppsala universitet.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Nihlén Fahlquist, Jessica
    Uppsala universitet.
    Veldwijk, Jorien
    Uppsala universitet; Erasmus University Rotterdam, the Netherlands.
    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 (i.e., 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 the 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 contributing to antibiotic resistance relatively more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and 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 lay people's use of antibiotics. 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 AR in clinical and societal communication has a potential to have an impact on personal decision making.

  • 13.
    Ancillotti, Mirko
    et al.
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Andersson, Dan I.
    Uppsala universitet.
    Nihlén Fahlquist, Jessica
    Uppsala universitet.
    An Effort Worth Making: a Qualitative Study of How Swedes Respond to Antibiotic Resistance2020In: 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.

  • 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.
    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.

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  • 15.
    Andersson, Henrik
    et al.
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Univ Borås, Fac Caring Sci Work Life & Social Welf, S-50190 Borås, Sweden..
    Svensson, Anders
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Kronoberg, Dept Ambulance Serv, Växjö, Sweden..
    Frank, Catharina
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden..
    Rantala, Andreas
    Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Lund Univ, Dept Hlth Sci, Lund, Sweden.;Helsingborg Gen Hosp, Emergency Dept, Helsingborg, Sweden..
    Holmberg, Mats
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Disciplinary Domain of Medicine and Pharmacy, research centers etc., Centre for Clinical Research Sörmland. Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Sormland, Dept Ambulance Serv, Katrineholm, Sweden..
    Bremer, Anders
    Linnaeus Univ, Fac Hlth & Life Sci, Växjö, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Växjö, Sweden.;Reg Kalmar Cty, Dept Ambulance Serv, Kalmar, Sweden..
    Ethics education to support ethical competence learning in healthcare: an integrative systematic review2022In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 23, no 1, article id 29Article, review/survey (Refereed)
    Abstract [en]

    Background Ethical problems in everyday healthcare work emerge for many reasons and constitute threats to ethical values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions. Methods In this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms 'health personnel', 'students', 'ethics', 'moral', 'simulation', and 'teaching'. In total, 40 articles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis. Results The review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient's best interests, along with making decisions about what needs to be done in a specific situation. Conclusions The review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals' and students' readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations.

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  • 16.
    Andersson, Henrik
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Svensson, Anders
    Linnaeus University.
    Frank, Catharina
    Linnaeus University.
    Rantala, Andreas
    Linnaeus University.
    Holmberg, Mats
    Linnaeus University.
    Bremer, Anders
    Ethics education to support ethical competence learning in healthcare: an integrative systematic review2022In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 23, no 1, article id 29Article in journal (Refereed)
    Abstract [en]

    Background: Ethical problems in everyday healthcare work emerge for many reasons and constitute threats to ethical values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions.

    Methods: In this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms ‘health personnel’, ‘students’, ‘ethics’, ‘moral’, ‘simulation’, and ‘teaching’. In total, 40 articles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis.

    Results: The review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient’s best interests, along with making decisions about what needs to be done in a specific situation.

    Conclusions: The review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals’ and students’ readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations.

  • 17.
    Andersson, Henrik
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. University of Borås, Sweden.
    Svensson, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kronoberg, Sweden.
    Frank, Catharina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Rantala, Andreas
    Lund University, Sweden;Helsingborg General Hospital, Sweden.
    Holmberg, Mats
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Uppsala University, Sweden;Region Sörmland, Sweden.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Ethics education to support ethical competence learning in healthcare: an integrative systematic review2022In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 23, article id 29Article, review/survey (Refereed)
    Abstract [en]

    Background: Ethical problems in everyday healthcare work emerge for many reasons and constitute threats to ethi- cal values. If these threats are not managed appropriately, there is a risk that the patient may be inflicted with moral harm or injury, while healthcare professionals are at risk of feeling moral distress. Therefore, it is essential to support the learning and development of ethical competencies among healthcare professionals and students. The aim of this study was to explore the available literature regarding ethics education that promotes ethical competence learning for healthcare professionals and students undergoing training in healthcare professions.

    Methods: In this integrative systematic review, literature was searched within the PubMed, CINAHL, and PsycInfo databases using the search terms ‘health personnel’, ‘students’, ‘ethics’, ‘moral’, ‘simulation’, and ‘teaching’. In total, 40 arti- cles were selected for review. These articles included professionals from various healthcare professions and students who trained in these professions as subjects. The articles described participation in various forms of ethics education. Data were extracted and synthesised using thematic analysis.

    Results: The review identified the need for support to make ethical competence learning possible, which in the long run was considered to promote the ability to manage ethical problems. Ethical competence learning was found to be helpful to healthcare professionals and students in drawing attention to ethical problems that they were not previ- ously aware of. Dealing with ethical problems is primarily about reasoning about what is right and in the patient’s best interests, along with making decisions about what needs to be done in a specific situation.

    Conclusions: The review identified different designs and course content for ethics education to support ethical competence learning. The findings could be used to develop healthcare professionals’ and students’ readiness and capabilities to recognise as well as to respond appropriately to ethically problematic work situations.

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  • 18.
    Andersson, Lars
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Några filosofiska kommentarer till livsåskådningssamtal i vården2019In: Nya vägar i vårdetiken / [ed] Gunilla Silfverberg, Lund: Studentlitteratur AB, 2019, 2, p. 123-153Chapter in book (Other academic)
  • 19.
    Andersson, Lars
    Marie Cederschiöld University, Department of Health Care Sciences.
    Perspektiv på etiksamtal i vården2022In: Etikarbete i vårdens vardag / [ed] Gunilla Silfverberg, Stockholm: Appell Förlag , 2022, 1, p. 84-102Chapter in book (Other academic)
  • 20.
    Andersson, Lars
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Lerner, Henrik
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Silfverberg, Gunilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    En modell för mänsklig värdighet2019In: Nya vägar i vårdetiken / [ed] Gunilla Silfverberg, Lund: Studentlitteratur AB, 2019, 2, p. 29-51Chapter in book (Other academic)
  • 21.
    Andersson, Thomas
    et al.
    University of Skövde, School of Business. University of Skövde, Enterprises for the Future Research Environment. Faculty of Theology, Diaconia and Leadership Studies, VID Specialized University, Oslo, Norway.
    Eriksson, Nomie
    University of Skövde, School of Business. University of Skövde, Enterprises for the Future Research Environment.
    Müllern, Tomas
    Jönköping International Business School, Sweden.
    Clinicians' psychological empowerment to engage in management as part of their daily work2022In: Journal of Health Organization & Management, ISSN 1477-7266, E-ISSN 1758-7247, Vol. 36, no 9, p. 272-287Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of the article is to analyze how physicians and nurses, as the two major health care professions, experience psychological empowerment for managerial work. Design/methodology/approach: The study was designed as a qualitative interview study at four primary care centers (PCCs) in Sweden. In total, 47 interviews were conducted, mainly with physicians and nurses. The first inductive analysis led us to the concept of psychological empowerment, which was used in the next deductive step of the analysis. Findings: The study showed that both professions experienced self-determination for managerial work, but that nurses were more dependent on structural empowerment. Nurses experienced that they had competence for managerial work, whereas physicians were more ignorant of such competence. Nurses used managerial work to create impact on the conditions for their clinical work, whereas physicians experienced impact independently. Both nurses and physicians experienced managerial work as meaningful, but less meaningful than nurses and physicians' clinical work. Practical implications: For an effective health care system, structural changes in terms of positions, roles, and responsibilities can be an important route for especially nurses' psychological empowerment. Originality/value: The qualitative method provided a complementary understanding of psychological empowerment on how psychological empowerment interacted with other factors. One such aspect was nurses' higher dependence on structural empowerment, but the most important aspect was that both physicians and nurses experienced that managerial work was less meaningful than clinical work. This implies that psychological empowerment for managerial work may only make a difference if psychological empowerment does not compete with physicians' and nurses' clinical work. 

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  • 22. Arrhenius, Gustaf
    et al.
    Bykvist, Krister
    Thorburn Stern, Rebecca
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Tersman, Folke
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of Philosophy, Ethics and Social Philosophy.
    Etiska avvägningar i pandemitider2021In: I en tid av pandemi: en ESO-antologi med samhällsvetenskapliga reflektioner / [ed] Jonas Eliasson; Lena Unemo, Stockholm: Expertgruppen för studier i offentlig ekonomi, Finansdepartementet , 2021, p. 59-72Chapter in book (Other (popular science, discussion, etc.))
  • 23. Asmussen, L.
    et al.
    Nyren, Andersson M.
    Kane, Bridget
    Karlstad University, Faculty of Arts and Social Sciences (starting 2013), Karlstad Business School (from 2013).
    The Experience of Healthcare Workers Following the Implementation of an IT-System in a Home for the Aged2017In: Irish Journal of Medical Science, ISSN 0021-1265, E-ISSN 1863-4362, Vol. 186, no Suppl.4, p. S161-S161Article in journal (Refereed)
    Abstract [en]

    We report on how health personnel at a home for the aged wereaffected by the introduction of an IT-system to help when nursedocumentation of patient activity and condition. The design of ITsystems for documentation by care-givers in healthcare is topicalbecause of the challenges posed by the need for high levels of safety,confidentiality and ethical responsibility. Health care staff work underextreme time-pressure including emergency situations. It is criticallyimportant to have IT-systems that are easy to use: to find informationand make records.This qualitative study utilises observation and interviews to gaindeep understanding. Observation data guide the interviews. Interviewswith nurses (10) and an IT analyst (1) are reported.Lack of time is a contributing factor as to why health personnel donot have a positive attitude to the use of IT documentation systems.Nurses feel that the lack of time does not afford them the opportunityto learn properly about the IT-system, and many of the staff haveworked with paper for over 20 years. It is also seen as a problem thatthere are many steps (clicks) before one can make a note or findinformation. One of the advantages reported with using IT-systems isthat all information is at one site. Everything is safety copied andconfidentiality is easier to secure.Using IT documentation systems facilitates the use of careplansthat are individualized for patient needs, instead treating all patientswith a particular disease, e.g. dementia, in the same way

  • 24.
    Asplund, Kjell
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Use of in vitro fertilization-ethical issues2020In: Upsala Journal of Medical Sciences, ISSN 0300-9734, E-ISSN 2000-1967, Vol. 125, no 2, p. 192-199Article, review/survey (Refereed)
    Abstract [en]

    This report is an ethical analysis based on both facts and values. In in vitro fertilization (IVF), there is an intricate interaction between rapid scientific development and changing societal values. In most countries, the ethical discussion is no longer on whether or not IVF in itself is ethically justifiable. Therefore, in this review, I discuss other ethical aspects that have emerged since IVF was first introduced, such as upper age limits, 'ownership' of gametes and embryos, IVF in single women and same-sex couples, preimplantatory genetic testing, social egg freezing, commercialization, public funding, and prioritization of IVF. Despite secularization, since religion still plays an important role in regulation and practices of IVF in many countries, positions on IVF among the world religions are summarized. Decision-making concerning IVF cannot be based only on clinical and economic considerations; these cannot be disentangled from ethical principles. Many concerns regarding the costs, effects, and safety of IVF subtly transcend into more complex questions about what it means to society to bear and give birth to children.

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  • 25.
    Asplund, Kjell
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Hulter Åsberg, Kerstin
    Department of Neuroscience, Uppsala University, Uppsala, Sweden.
    Reporting ethical approval in health and social science articles: an audit of adherence to GDPR and national legislation2021In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 22, no 1, p. 92-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation.

    METHODS: Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020.

    RESULTS: Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1-2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval.

    CONCLUSIONS: We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.

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  • 26.
    Asplund, Kjell
    et al.
    Umeå Univ, Dept Publ Hlth & Clin Med, Reimersholmsgatan 59, S-11740 Stockholm, Sweden..
    Hulter Åsberg, Kerstin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Reporting ethical approval in health and social science articles: an audit of adherence to GDPR and national legislation2021In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 22, article id 92Article in journal (Refereed)
    Abstract [en]

    Background: Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation.

    Methods: Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020.

    Results: Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1-2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval.

    Conclusions: We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.

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  • 27.
    Asplund, Kjell
    et al.
    Umeå Univ, Dept Publ Hlth & Clin Med, Umeå, Sweden.;Umeå Univ, Dept Publ Hlth & Clin Med, Regeringsgatan 59, S-11740 Stockholm, Sweden..
    Hulter Åsberg, Kerstin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Cell Biology.
    Reporting Ethics Approval in Articles on Criminality: An Audit of Adherence to Swedish Legislation2023In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 18, no 3, p. 147-153Article in journal (Refereed)
    Abstract [en]

    According to the Swedish Ethics Review Act, research involving personal data on crimes should undergo independent ethics review. To explore the reporting of ethics approval, we extracted information from articles with Swedish personal data on crimes published in 2013-2021. Of the identified 298 articles, 92 (31%) failed to report ethics approval. Failures were particularly common in articles with a qualitative design, single or few authors and when there was a social science focus. Failures varied markedly between universities. We conclude that failures to report compulsory ethics approval are common in articles involving personal data on crime and that these failures vary markedly with the research setting. Several indicators of poor adherence to the Ethics Review Act have been identified.

  • 28.
    Axelsson, Inge
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Hårdnad konkurrens ger dopad forskning2016Other (Other (popular science, discussion, etc.))
  • 29.
    Axelsson, Per
    Umeå University, Faculty of Arts, Centre for Sami Research.
    Preconceived opinions: Iñupiat and Swedish Sami populations in polio research2012In: Rivers to cross: Sami land use and the human dimension / [ed] Peter Sköld & Krister Stoor, Umeå: Vaartoe, Centrum för samisk forskning, Umeå universitet , 2012, p. 169-177Chapter in book (Other academic)
  • 30.
    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)
  • 31.
    Barkane, Irena
    et al.
    Univ Latvia, Riga, Latvia..
    O'Cathaoir, Katharina
    Univ Copenhagen, Copenhagen, Denmark..
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Eenmaa, Helen
    Univ Tartu, Tartu, Estonia..
    The legal implications of covid-19 vaccination certificates: Implementation experiences from Nordic and Baltic region2022In: New legal reality: Challenges and perspectives, Riga: University of Latvia Press, 2022, Vol. 2, p. 209-223Conference paper (Refereed)
    Abstract [en]

    EU Digital green certificates were initially envisaged as a joint EU initiative to facilitate free movement during the pandemic. However, many countries rapidly extended their use in different contexts at the national level, raising serious ethical and legal concerns and questions, in particular, on how to strike a right balance between the interests of the individual and the interests of society. The paper aims to explore the legal implications of using vaccination certificates at the national level, in particular by exploring and comparing practices in selected Nordic and Baltic countries. The article emphasises that, despite COVID-19 crises, the governments should protect fundamental rights and values and when deciding on new restrictions carefully assess their necessity and proportionality. National responses call for a new regulatory framework to ensure responsible use of digital technologies in public interests.

  • 32.
    Barra, Mathias
    et al.
    Akershus Univ Hosp, Norway.
    Broqvist, Mari
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Gustavsson, Erik
    Linköping University, Department of Culture and Society, Division of Philosophy, History, Arts and Religion. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Henriksson, Martin
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Juth, Niklas
    Karolinska Inst, Sweden.
    Sandman, Lars
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Society and Health. Linköping University, Faculty of Medicine and Health Sciences.
    Solberg, Carl Tollef
    Akershus Univ Hosp, Norway; Univ Bergen, Norway.
    Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda2020In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 28, no 1, p. 25-44Article in journal (Refereed)
    Abstract [en]

    Priority setting in health care is ubiquitous and health authorities are increasingly recognising the need for priority setting guidelines to ensure efficient, fair, and equitable resource allocation. While cost-effectiveness concerns seem to dominate many policies, the tension between utilitarian and deontological concerns is salient to many, and various severity criteria appear to fill this gap. Severity, then, must be subjected to rigorous ethical and philosophical analysis. Here we first give a brief history of the path to todays severity criteria in Norway and Sweden. The Scandinavian perspective on severity might be conducive to the international discussion, given its long-standing use as a priority setting criterion, despite having reached rather different conclusions so far. We then argue that severity can be viewed as a multidimensional concept, drawing on accounts of need, urgency, fairness, duty to save lives, and human dignity. Such concerns will often be relative to local mores, and the weighting placed on the various dimensions cannot be expected to be fixed. Thirdly, we present what we think are the most pertinent questions to answer about severity in order to facilitate decision making in the coming years of increased scarcity, and to further the understanding of underlying assumptions and values that go into these decisions. We conclude that severity is poorly understood, and that the topic needs substantial further inquiry; thus we hope this article may set a challenging and important research agenda.

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  • 33.
    Bea, Sara
    Science Technology and Innovation Studies, The University of Edinburgh, UK.
    No Heroics, Please: Mapping Deceased Donation Practices in a Catalan Hospital2017Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This thesis presents an in-depth ethnographic mapping of deceased donation in a Catalan hospital. A unique site in terms of leading edge technoscientific practices, high rates of donation and its consolidated specialised team of transplant coordinators (TCs). The thesis situates donation as an embedded medical practice and traces the practicalities and specificities of making donation a possibility at the hospital. The empirical accounts offer a distinctive contribution that complements and challenges existing social sciences literature about donation. The latter have predominantly focused on donation as a controversial practice through highlighting the emotional experiences of donors’ families and individual medical practitioners involved. This empirical investigation mobilises, and further develops, STS material semiotics tools to provide an account of donation enacted as both procurement and healthcare. Ethnographic insights illustrate the shifting processes of mutual inclusion and exclusion that underpin the trajectory of integrating donation as a routinized hospital practice, along the recurring set of enduring tensions. This is achieved by following the work of TCs along the stages of donor detection, evaluation, maintenance, consent request and organ extraction. Crucially, the analytical focus decenters the individual actors’ perspectives, broadening the scope of the inquiry and making visible the complex sociomaterial arrangements that take place, inside and outside the hospital, which are rendered as a gradual process of assembling donations. Families’ consent to donation is essential but it is decentered, it is neither that which starts a donation process nor the only factor that contributes to the assembling of a donation process. Unlike available anthropological and sociological studies of donation this work is not about documenting the reductionist transition from patient to donor, whole to parts, person to thing and denouncing the fall from subject to object reified in donation practices. The emphasis here is on tracing the overlap between donors as patients, thus the analysis shows the shifting enactments of the embedded donor/patient configuration, which includes the donor/body, donor/person and donor/corpse figures simultaneously along the donation process. The intervention of bodies as active entities is examined through a speculative and pragmatic elucidation on the situated and relational enactments of responsive bodies and organs. This thesis contributes to contemporary re/articulations of materiality and agency through the lens of distributed joint action and entangled actors from a nonanthropomorphic stance. The research also contributes to current policy debates in the UK, and in Scotland in particular, that propose to tackle the national problem of low donation rates with a legislative move to an opt-out system for donation. It offers robust empirical evidence to contest the dominant organ shortage problematisation that is reduced to the legal polarity of either opting in or out of donation. I suggest that questions about increasing donation rates cannot be restricted to the domain of individual choice as this excludes the situated medical practices that enable the choice of donation in the first place.

  • 34. 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, 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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  • 35. Benatar, Michael
    et al.
    Stanislaw, Christine
    Reyes, Eliana
    Hussain, Sumaira
    Cooley, Anne
    Fernandez, Maria Catalina
    Dauphin, Danielle D.
    Michon, Sara-Claude
    Andersen, Peter M.
    Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Neuroscience.
    Wuu, Joanne
    Presymptomatic ALS genetic counseling and testing: Experience and recommendations2016In: Neurology, ISSN 0028-3878, E-ISSN 1526-632X, Vol. 86, no 24, p. 2295-2302Article, review/survey (Refereed)
    Abstract [en]

    Remarkable advances in our understanding of the genetic contributions to amyotrophic lateral sclerosis (ALS) have sparked discussion and debate about whether clinical genetic testing should routinely be offered to patients with ALS. A related, but distinct, question is whether presymptomatic genetic testing should be offered to family members who may be at risk for developing ALS. Existing guidelines for presymptomatic counseling and testing are mostly based on small number of individuals, clinical judgment, and experience from other neurodegenerative disorders. Over the course of the last 8 years, we have provided testing and 317 genetic counseling sessions (including predecision, pretest, posttest, and ad hoc counseling) to 161 first-degree family members participating in the Pre-Symptomatic Familial ALS Study (Pre-fALS), as well as testing and 75 posttest counseling sessions to 63 individuals with familial ALS. Based on this experience, and the real-world challenges we have had to overcome in the process, we recommend an updated set of guidelines for providing presymptomatic genetic counseling and testing to people at high genetic risk for developing ALS. These recommendations are especially timely and relevant given the growing interest in studying presymptomatic ALS.

  • 36. Bernstein, Michael H
    et al.
    Rosenfield, Maayan N
    Blease, Charlotte
    General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.
    Magill, Molly
    Terek, Richard M
    Savulescu, Julian
    Beaudoin, Francesca L
    Rich, Josiah D
    Wartolowska, Karolina
    How do US orthopaedic surgeons view placebo-controlled surgical trials?: A pilot online survey study2022In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257Article in journal (Refereed)
    Abstract [en]

    Randomised placebo-controlled trials (RPCTs) are the gold standard for evaluating novel treatments. However, this design is rarely used in the context of orthopaedic interventions where participants are assigned to a real or placebo surgery. The present study examines attitudes towards RPCTs for orthopaedic surgery among 687 orthopaedic surgeons across the USA. When presented with a vignette describing an RPCT for orthopaedic surgery, 52.3% of participants viewed it as 'completely' or 'mostly' unethical. Participants were also asked to rank-order the value of five different types of evidence supporting the efficacy of a surgery, ranging from RPCT to an anecdotal report. Responses regarding RPCTs were polarised with 26.4% viewing it as the least valuable (even less valuable than an anecdote) and 35.7 .% viewing it as the most valuable. Where equipoise exists, if we want to subject orthopaedic surgeries to the highest standard of evidence (RPCTs) before they are implemented in clinical practice, it will be necessary to educate physicians on the value and ethics of placebo surgery control conditions. Otherwise, invasive procedures may be performed without any benefits beyond possible placebo effects.

  • 37.
    Bertilsson, Emelie
    et al.
    Kalmar County Hospital, Sweden.
    Semark, Birgitta
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linnaeus University, Faculty of Health and Life Sciences, Department of Medicine and Optometry.
    Schildmeijer, Kristina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Carlsson, Jörg
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Usage of Do-not-attempt-to resuscitate-orders in a Swedish community hospital: patient involvement, documentation and compliance2018In: Resuscitation, ISSN 0300-9572, E-ISSN 1873-1570, Vol. 130, no s1, p. e93-e94Article in journal (Refereed)
  • 38.
    Bertilsson, Emilie
    et al.
    Kalmar County Hospital, Sweden.
    Semark, Birgitta
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Schildmeijer, Kristina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Carlsson, Jörg
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital, Sweden.
    Do-not-attempt-to resuscitate-orders in a Swedish Community Hospital: does the wording of these orders point towards discrimination?2019In: Resuscitation, ISSN 0300-9572, E-ISSN 1873-1570, Vol. 142, no s1, p. e5-e5Article in journal (Refereed)
  • 39.
    Bertilsson, Emilie
    et al.
    Kalmar County Hospital, Sweden.
    Semark, Birgitta
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Schildmeijer, Kristina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Carlsson, Jörg
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital, Sweden.
    Usage of do-not-attempt-to-resuscitate orders in a Swedish community hospital: patient involvement, documentation and compliance2020In: BMC Medical Ethics, E-ISSN 1472-6939, Vol. 21, no 1, p. 1-6, article id 67Article in journal (Refereed)
    Abstract [en]

    Background: To characterize patients dying in a community hospital with or without attempting cardiopulmonary resuscitation (CPR) and to describe patient involvement in, documentation of, and compliance with decisions on resuscitation (Do-not-attempt-to-resuscitate orders; DNAR).

    Methods: All patients who died in Kalmar County Hospital during January 1, 2016 until December 31, 2016 were included. All information from the patients’ electronic chart was analysed.

    Results: Of 660 patients (mean age 77.7 ± 12.1 years; range 21–101; median 79; 321 (48.6%) female), 30 (4.5%) were pronounced dead in the emergency department after out-of-hospital CPR. Of the remaining 630 patients a DNAR order had been documented in 558 patients (88.6%). Seventy had no DNAR order and 2 an explicit order to do CPR. In 43 of these 70 patients CPR was unsuccessfully attempted while the remaining 27 patients died without attempting CPR. In 2 of 558 (0.36%) patients CPR was attempted despite a DNAR order in place. In 412 patients (73.8%) the DNAR order had not been discussed with neither patient nor family/friends. Moreover, in 75 cases (13.4%) neither patient nor family/friends were even informed about the decision on code status.

    Conclusions: In general, a large percentage of patients in our study had a DNAR order in place (88.6%). However, 27 patients (4.3%) died without CPR attempt or DNAR order. DNAR orders had not been discussed with the patient/surrogate in almost three fourths of the patients. Further work has to be done to elucidate the barriers to discussions of CPR decisions with the patient.

  • 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. 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)
  • 42.
    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. Reg Kronoberg, Dept Res & Dev, Växjö, Sweden; Karolinska Inst, Stockholm Ctr Healthcare Eth CHE, LIME, Stockholm, Sweden.
    "It is very hard to just accept this": a qualitative study of palliative care teams' ethical reasoning when patients do not want information2024In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 23, no 1, article id 91Article in journal (Refereed)
    Abstract [en]

    Background

    The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed.

    Methods

    The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data.

    Results

    The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way.

    Conclusions

    In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient’s wishes, or to provide information with the patient’s best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.

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  • 43.
    Blease, Charlotte
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group. Beth Israel Deaconess Med Ctr, Digital Psychiat, Boston, MA USA.
    Open AI meets open notes: surveillance capitalism, patient privacy and online record access2024In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 50, no 2, p. 84-89Article in journal (Refereed)
    Abstract [en]

    Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding and remembering their treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated.

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    FULLTEXT01
  • 44.
    Blease, Charlotte
    et al.
    Program in Placebo Studies, General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA, 02215, USA;School of Psychology, University College Dublin, Dublin, Ireland.
    Annoni, Marco
    Overcoming disagreement: a roadmap for placebo studies2019In: Biology & Philosophy, ISSN 0169-3867, E-ISSN 1572-8404, Vol. 34, no 2, article id 18Article in journal (Refereed)
    Abstract [en]

    In the field of placebo studies residual disagreement about the terminology placebo' and placebo effect' still persists. We differentiate between the conceptualization of placebos in clinical trials; and placebo effects understood as a psychobiological phenomenon. With respect to the latter, we argue that a scientific placebo paradigm' has emerged, indicating thatat least among placebo scientiststhere exists relatively stable consensus about how to conceive of placebo effects. We claim that existence of a placebo paradigm does not protect concepts from revision; nonetheless, we argue that scientific progress is dependent on, and guided by relative conceptual stability. Therefore, to mount persuasive arguments for conceptual revision in respect of placebo effects' we argue, critics either need to defend the claim that a placebo paradigm is not underway, or that there are major scientific failings in respect of it. With these considerations in mind we examine three alternative proposals for conceptual reform: Grunbaum/Howick's relativity models of placebo concepts; Moerman/Brody's meaning response; and Nunn/Turner's proposal for conceptual eliminativism. We derive two conclusions from this evaluation. First, we conclude that no convincing arguments have so far been presented for conceptual overhaul of placebo effects.' Notwithstanding this analysis, we conclude that refinement of this concept is likely. Second, we agree with Turner and Nunn that the term placebo' in the context of randomized controlled trials remains a source of confusion for many researchers, risking the design and scientific integrity of clinical findings. Therefore, in these contexts, replacing the term placebo' with control' is justified.

  • 45.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center/Harvard Medical School, 330 Brookline Avenue, Boston, MA 02215, USA; School of Psychology, University College Dublin, Dublin, Ireland.
    Bell, Sigall K
    Patients as diagnostic collaborators: sharing visit notes to promote accuracy and safety2019In: Diagnosis, ISSN 2194-8011, E-ISSN 2194-802X, Vol. 6, no 3, p. 213-221Article in journal (Refereed)
    Abstract [en]

    Error resulting from missed, delayed, or wrong diagnoses is estimated to occur in 10-15% of ambulatory and inpatient encounters, leading to serious harm in around half of such cases. When it comes to conceptualizing diagnostic error, most research has focused on factors pertaining to: (a) physician cognition and (b) ergonomic or systems factors related to the physician's working environment. A third factor - the role of patients in diagnostic processes - remains relatively under-investigated. Yet, as a growing number of researchers acknowledge, patients hold unique knowledge about themselves and their healthcare experience, and may be the most underutilized resource for mitigating diagnostic error. This opinion article examines recent findings from patient surveys about sharing visit notes with patients online. Drawing on these survey results, we suggest three ways in which sharing visit notes with patients might enhance diagnostic processes: (1) avoid delays and missed diagnoses by enhancing timely follow up of recommended tests, results, and referrals; (2) identify documentation errors that may undermine diagnostic accuracy; and (3) strengthen patient-clinician relationships thereby creating stronger bidirectional diagnostic partnerships. We also consider the potential pitfalls or unintended consequences of note transparency, and highlight areas in need of further research.

  • 46.
    Blease, Charlotte
    et al.
    Program in Placebo Studies, Department of General Medicine and Primary Care Research, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA;School of Psychology, University College Dublin, Dublin, Ireland .
    Bernstein, Michael H
    Locher, Cosima
    Open-label placebo clinical trials: is it the rationale, the interaction or the pill?2020In: BMJ Evidence-Based Medicine, ISSN 2515-446X, E-ISSN 2515-4478, Vol. 25, no 5, p. 159-165Article in journal (Refereed)
  • 47.
    Blease, Charlotte
    et al.
    Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, USA.
    DesRoches, Catherine
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Hayden, Adam
    Rexhepi, Hanife
    Salmi, Liz
    Knowledge, power, and patients: The ethics of open notes2021In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257Article in journal (Other (popular science, discussion, etc.))
  • 48.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care Research, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA, 02215, USA;School of Psychology, University College Dublin, Belfield, Dublin 4, Ireland.
    Geraghty, Keith
    Are ME/CFS Advocacy Organisations militant?: Patient Protest in a Medical Controversy2018In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 15, no 3, p. 393-401Article in journal (Refereed)
    Abstract [en]

    Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFSand by extension, ME/CFS patient organizations (POs)exhibit militant social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of militant patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.

  • 49.
    Blease, Charlotte
    et al.
    School of Psychology, University College Dublin, Dublin 4, Ireland;Program in Placebo Studies, General Medicine and Primary Care, Beth Israel Deaconess Medical Center Harvard Medical School, Boston, MA, USA.
    Kelley, John M
    Trachsel, Manuel
    Informed consent in psychotherapy: implications of evidence-based practice2018In: Journal of Contemporary Psychotherapy, ISSN 0022-0116, E-ISSN 1573-3564, Vol. 48, no 2, p. 69-78Article in journal (Refereed)
    Abstract [en]

    Evidence-based practice in psychotherapy carries widely unacknowledged consequences for ethical clinical practice. Informed consent to psychological treatments is an ethical imperative in clinical practice, and there is an ethical obligation for psychiatrists, psychotherapists, and clinical psychologists to provide adequate disclosure to patients about treatments. This is codified within the professional guidelines of the American Psychological Association (APA) and the American Medical Association. Given the APA's commitment to evidence-based practice, the objective of this paper is to argue that the provision of information about how treatments work should be based on evidence-based research on psychotherapeutic treatments. Case-based scenarios are used to illustrate a range of ethical issues pertaining to evidence-based practice and informed consent in psychotherapy. This paper argues that informed consent processes in psychotherapy must be commensurate with the latest integrated findings on empirically-supported treatments; process research into psychological treatments; research into therapist expertise; as well as evidence about individual patients' characteristics, culture, and preferences. Our conclusions for practice are challenging: standard ethical interpretations of informed consent to psychotherapy must go further. It is not sufficient for therapists only to describe the specific techniques associated with particular treatment modalities, it is also necessary to disclose information about nonspecific factors. There appears to be consensus among therapists and psychotherapy researchers that these factors are relevant to successful treatment outcome. Our paper aims to launch fresh, serious, pragmatic debate in professional psychotherapy about necessary revisions of ethical codes with respect to information disclosure.

  • 50.
    Blease, Charlotte
    et al.
    Interdisciplinary Health Research, Beth Israel Deaconess Medical Center/Harvard Medical School.
    Kelley, John M.
    Trachsel, Manuel
    Patient information on evidence and clinical effectiveness of psychotherapy2020In: Oxford Handbook of Psychotherapy Ethics / [ed] Manuel Trachsel, Jens Gaab, Nikola Biller-Andorno, Şerife Tekin & John Z. Sadler, Oxford: Oxford University Press, 2020, p. 312-329Chapter in book (Refereed)
    Abstract [en]

    This chapter focuses on what information should be provided to patients about the evidence base supporting the clinical effectiveness of psychotherapy. In particular, the authors consider whether research on the relative efficacy of different forms of psychotherapy should be provided to patients, as well as whether patients should be provided with information on the relative importance of common factors versus specific factors as the causal agents of clinical improvement. After a critical review and discussion of the relatively few scholarly papers that have previously addressed this question, the authors conclude that patients should be provided with an honest, transparent, and impartial summary of the evidence related to their treatment options including information about the common factors. The authors offer this conclusion even while acknowledging that considerable controversy persists about how to interpret the psychotherapy research evidence base. Finally, the authors strongly support continued research into these questions, especially given the relatively limited scholarly attention they have received to date.

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