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  • 301.
    Silén, Marit
    et al.
    Uppsala universitet, Centrum för forsknings- och bioetik.
    Haglund, Kristina
    Uppsala universitet, Institutionen för neurovetenskap.
    Hansson, Mats G.
    Uppsala universitet, Centrum för forsknings- och bioetik.
    Ramklint, Mia
    Uppsala universitet, Institutionen för neurovetenskap.
    Ethics rounds do not improve the handling of ethical issues by psychiatric staff2015In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 69, no 6, p. 1700-1707Article in journal (Refereed)
    Abstract [en]

    Background. One way to support healthcare staff in handling ethically difficult situations is through ethics rounds that consist of discussions based on clinical cases and are moderated by an ethicist. Previous research indicates that the handling of ethically difficult situations in the workplace might have changed after ethics rounds. This, in turn, would mean that the “ethical climate”, i.e. perceptions of how ethical issues are handled, would have changed. Aim. To investigate whether ethics rounds could improve the ethical climate perceived by staff working in psychiatry outpatient clinics. Methods. In this quasi-experimental study, six inter-professional ethics rounds led by a philosopher/ethicist were conducted at two psychiatry outpatient clinics. Changes in ethical climate were measured at these clinics as well as at two control clinics at baseline and after the intervention period using the instrument Hospital Ethical Climate Survey. Results. Within-groups comparisons of median sum scores of ethical climate showed that no statistically significant differences were found in the intervention group before or after the intervention period. The median sum scores for ethical climate were significantly higher, both at baseline and after the intervention period (P ≤ 0.001; P = 0.046), in the intervention group. Conclusions. Ethics rounds in psychiatric outpatient clinics did not result in significant changes in ethical climate. Outcomes of ethics rounds might, to a higher degree, be directed towards patient-related outcomes rather than towards the staff's working environment, as the questions brought up for discussion during the ethics rounds concerned patient-related issues.

  • 302.
    Silén, Marit
    et al.
    Hälsohögskolan, Högskolan i Jönköping.
    Kjellström, Sofia
    Hälsohögskolan, Högskolan i Jönköping.
    Christensson, Lennart
    Hälsohögskolan, Högskolan i Jönköping.
    Sidenvall, Birgitta
    Hälsohögskolan, Högskolan i Jönköping.
    Svantesson, Mia
    Vårdvetenskapligt forskningscentrum, Örebro läns landsting.
    What actions promote a positive ethical climate?: A critical incident study of nurses' perceptions2012In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 19, no 4, p. 501-512Article in journal (Refereed)
    Abstract [en]

    Few qualitative studies explore the phenomenon of positive ethical climate and what actions are perceived as promoting it. Therefore, the aim of this study was to explore and describe actions that acute care ward nurses perceive as promoting a positive ethical climate. The critical incident technique was used. Interviews were conducted with 20 nurses at wards where the ethical climate was considered positive, according to a previous study. Meeting the needs of patients and next of kin in a considerate way, as well as receiving and giving support and information within the work group, promoted a positive ethical climate. Likewise, working as a team with a standard for behaviour within the work group promoted a positive ethical climate. Future research should investigate other conditions that might also promote a positive ethical climate.

  • 303.
    Silén, Marit
    et al.
    Faculty of Health and Occupational Studies, University of Gävle, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Sweden.
    Svantesson, Mia
    Örebro University, School of Health Sciences. Örebro University Hospital. Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
    Impact of clinical ethics support on daily practice: First-line managers' experiences in the Euro-MCD project2019In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834Article in journal (Refereed)
    Abstract [en]

    AIM: To explore first-line managers' experiences of what Moral Case Deliberation (MCD) has meant for daily practice, to describe perceptions of context influence and responsibility to manage ethically difficult situations.

    BACKGROUND: In order to find measures to evaluate MCD, the European Moral Case Deliberation Outcome instrument (Euro-MCD) was developed and is now in the stage of revision. For this, there is a need of several perspectives, one of them being the managerial bird-eye perspective.

    METHOD: Eleven first-line managers at workplaces, participating in the Euro-MCD project, were interviewed and thematic analysis was applied.

    RESULTS: Managers' experiences were interpreted as enhanced ethical climate: a closer-knit and more emotionally mature team, morally strengthened individuals, as well as ethics leaving its marks on everyday work and morally grounded actions. Despite organisational barriers they felt inspired to continue ethics work.

    CONCLUSION AND IMPLICATIONS: This study confirmed, but also added ethical climate aspects, such as morally grounded actions. Furthermore, adding ethical climate as a construct in the Euro-MCD instrument should be considered. First-line managers need clear directives from their managers that ethics work needs to be prioritised for the good of both the staff and the patients.

  • 304.
    Silén, Marit
    et al.
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Svantesson, Mia
    Örebro universitet, Hälsoakademin.
    Ahlström, Gerd
    Nurses' conceptions of decision making concerning life-sustaining treatment2008In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 15, no 2, p. 160-173Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician-nurse collaboration, lack of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed.

  • 305. Simpson, Claire L
    et al.
    Goldenberg, Aaron J
    Culverhouse, Rob
    Daley, Denise
    Igo, Robert P
    Jarvik, Gail P
    Mandal, Diptasri M
    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.
    Montgomery, Courtney Gray
    Pierce, Brandon
    Plaetke, Rosemarie
    Shete, Sanjay
    Goddard, Katrina A B
    Stein, Catherine M
    Practical barriers and ethical challenges in genetic data sharing2014In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 11, no 8, p. 8383-8398Article in journal (Refereed)
    Abstract [en]

    The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. NIH has required that genome-wide association study data be deposited in the Database of Genotypes and Phenotypes (dbGaP) since 2003. In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo enforcement, and difficulty in accessing dbGaP data. We surveyed the International Genetic Epidemiology Society (IGES) membership about their experiences. One hundred and seventy five (175) individuals completed the survey, a response rate of 27%. Of respondents who received data from dbGaP (43%), only 32% perceived the application process as easy but most (75%) received data within five months. Remaining challenges include difficulty in identifying an institutional signing official and an overlong application process. Only 24% of respondents had contributed data to dbGaP. Of these, 31% reported local IRB restrictions on data release; an additional 15% had to reconsent study participants before depositing data. The majority of respondents (56%) disagreed that the publication embargo period was sufficient. In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach.

  • 306. Sjostrand, Manne
    et al.
    Karlsson, Petter
    Sandman, Lars
    Helgesson, Gert
    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.
    Juth, Niklas
    Conceptions of decision-making capacity in psychiatry: interviews with Swedish psychiatrists2015In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 16, article id 34Article in journal (Refereed)
    Abstract [en]

    Background: Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients' capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics. Methods: Eight in-depth interviews were conducted with Swedish psychiatrists. The interviews were analysed according to descriptive qualitative content analysis in which categories and sub-categories were distilled from the material. Results: Decision-making capacity was seen as dependent on understanding, insight, evaluation, reasoning, and abilities related to making and communicating a choice. However, also the actual content of the decision was held as relevant. There was an ambivalence regarding the relationship between psychiatric disorders and capacity and a tendency to regard psychiatric patients who made unwise treatment decisions as decisionally incapable. However, in cases relating to patients with somatic illnesses, the assumption was rather that patients who made unwise decisions were imprudent but yet decisionally capable. Conclusions: The respondents' conceptions of decision-making capacity were mainly in line with standard theories. However, the idea that capacity also includes aspects relating to the content of the decision clearly deviates from the standard view. The tendency to regard imprudent choices by psychiatric patients as betokening lack of decision-making capacity differs from the view taken of such choices in somatic care. This difference merits further investigations.

  • 307. Sjostrand, Manne
    et al.
    Sandman, Lars
    Karlsson, Petter
    Helgesson, Gert
    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.
    Juth, Niklas
    Ethical deliberations about involuntary treatment: interviews with Swedish psychiatrists2015In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 16, article id 37Article in journal (Refereed)
    Abstract [en]

    Background: Involuntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists. Methods: In-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In relation to this, issues about patient autonomy were also discussed. The interviews were analysed using a descriptive qualitative approach. Results: The answers focus on two main aspects of compulsory treatment. Firstly, deliberations about when and why it was justifiable to make a decision on involuntary treatment in a specific case. Here the cons and pros of ordering compulsory treatment were discussed, with particular emphasis on the consequences of providing treatment vs. refraining from ordering treatment. Secondly, a number of issues relating to background factors affecting decisions for or against involuntary treatment were also discussed. These included issues about the Swedish Mental Care Act, healthcare organisation and the care environment. Conclusions: Involuntary treatment was generally seen as an unwanted exception to standard care. The respondents' judgments about involuntary treatment were typically in line with Swedish law on the subject. However, it was also argued that the law leaves room for individual judgments when making decisions about involuntary treatment. Much of the reasoning focused on the consequences of ordering involuntary treatment, where risk of harm to the therapeutic alliance was weighed against the assumed good consequences of ensuring that patients received needed treatment. Cases concerning suicidal patients and psychotic patients who did not realise their need for care were typically held as paradigmatic examples of justified involuntary care. However, there was an ambivalence regarding the issue of suicide as it was also argued that risk of suicide in itself might not be sufficient for justified involuntary care. It was moreover argued that organisational factors sometimes led to decisions about compulsory treatment that could have been avoided, given a more patient-oriented healthcare organisation.

  • 308. Sjöberg, R L
    et al.
    Lindholm, T
    Decision-making and euthanasia.2003In: British Journal of Psychiatry, ISSN 0007-1250, E-ISSN 1472-1465, Vol. 182Article in journal (Refereed)
  • 309. Sjöberg, Rickard L
    ["The tilting plane" and the consequences of introducing euthanasia].2010In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 107, no 13-14Article in journal (Refereed)
  • 310. Sjöberg, Rickard L
    et al.
    Lindholm, Torun
    Gender biases in decisions on euthanasia among Swedish jurors.2003In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 57, no 6Article in journal (Refereed)
    Abstract [en]

    The present study set out to investigate whether group-based biases may influence decisions regarding euthanasia in Swedish jurors (nämndemän). Thirty-eight Swedish jurors were presented with a case description of euthanasia in a severely brain-damaged patient. Age and gender of the patient were systematically varied. The jurors were asked to what extent they believed that euthanasia was ethical in the case presented to them and whether they thought that it should be legal. Jurors tended to be supportive of euthanasia and were more so when it was used on patients who belonged to the opposite gender. These results suggest that group-based biases may influence decisions regarding euthanasia in Swedish jurors. The finding has implication for the Swedish debate regarding a possible legalization of such procedures.

  • 311.
    Skärsäter, Ingela
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Keogh, Brian
    School of Nursing and Midwifery, Trinity College, Dublin, Ireland.
    Doyle, Louise
    School of Nursing and Midwifery, Trinity College, Dublin, Ireland.
    Ellilä, Heikki
    University of Applied Science Turku, Turku, Finland.
    Jormfeldt, Henrika
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Lahti, Mari
    School of Health Sciences, Faculty of Medicine & Health Sciences, University of Nottingham, Institute of Mental Health Building, Triumph Road, Innovation Park, United Kingdom.
    Higgins, Agnes
    Halmstad University, School of Health and Welfare.
    Meade, Oonagh
    School of Psychology, National University of Ireland, Galway, Ireland.
    Sitvast, Jan
    University of Applied Sciences HU, Utrecht, Netherlands.
    Stickley, Theodore
    School of Health Sciences, Faculty of Medicine & Health Sciences, University of Nottingham, Institute of Mental Health Building, Triumph Road, Innovation Park, United Kingdom.
    Kilkku, Nina
    Tampere University of Applied Sciences, Tampere, Finland.
    Advancing the knowledge, skills and attitudes of mental health nurses working with families and caregivers: A critical review of the literature2018In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 32, p. 138-146Article, review/survey (Refereed)
    Abstract [en]

    Involving and supporting the family members and caregivers of people with mental illness is essential to high-quality mental health services. However, literature suggests that there is a lack of engagement between family members and mental health nurses (MHNs). Lack of knowledge among MHNs is often cited as one of the main reasons for this lack of engagement. The aim of this review was to explore the knowledge, skills and attitudes that are required by MHNs to enable to them to work more effectively with families affected by mental illness. A literature based critical review was used to access and review 35 papers in order to extract concepts that could inform the design of eLearning materials to assist MHNs advance their knowledge in this area. Two overarching themes were identified; ‘Mental health problems and the family’ and ‘Working with the family’. From these themes, the knowledge, skills and attitudes required to work more effectively with families are described. The findings from this review provide a descriptive account of the knowledge skills and attitudes that are required for effective family work. In addition, the review provides an empirical foundation for education programmes in the area. © 2018 Elsevier Ltd

  • 312.
    Smajdor, Anna
    et al.
    University of East Anglia.
    Cutas, Daniela
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Artificial Gametes2016Report (Other academic)
  • 313.
    Smajdor, Anna
    et al.
    Norwich School of Medicine, University of East Anglia.
    Cutas, Daniela
    Göteborgs universitet.
    Artificial gametes and the ethics of unwitting parenthood2014In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 40, no 11, p. 748-751Article in journal (Refereed)
    Abstract [en]

    In this paper, we explore the ethical and legal implications of a hypothetical use of artificial gametes (AGs): that of taking a person’s cells, converting them to artificial gametes and using them in reproduction – without that person’s knowledge or consent. We note the common reliance on genetic understandings of parenthood in the law, and suggest that injustices may arise if unwitting genetic parents are sued for child support. We draw parallels between the hypothetical use of AGs to facilitate unwitting parenthood, and real examples of unwitting parenthood following cases of sperm theft. We also look at the harm that might be caused by becoming a genetic parent, independently of financial obligations, and ask whether such harm should be understood in terms of theft of property. These examples help to highlight some of the current and prospective  difficulties for the regulation of genetic and legal parenthood, and show how existing regulatory assumptions are likely to be further challenged by the development of AGs. We conclude by suggesting that the reliance on genetic connections to generate parental responsibility (financial or otherwise) for offspring is flawed, and that alternative ways of establishing parental responsibility should be considered.

  • 314.
    Smajdor, Anna
    et al.
    University of Oslo.
    Cutas, Daniela
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden.
    Takala, Tuija
    University of Helsinki.
    Artificial gametes, the unnatural and the artefactual2018In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 44, no 6, p. 404-408Article in journal (Refereed)
    Abstract [en]

    In debates on the ethics of artificial gametes, concepts of naturalness have been used in a number of different ways. Some have argued that the unnaturalness of artificial gametes means that it is unacceptable to use them in fertility treatments. Others have suggested that artificial gametes are no less natural than many other tissues or processes in common medical use. We suggest that establishing the naturalness or unnaturalness of artificial gametes is unlikely to provide easy answers as to the acceptability of using them in fertility medicine. However, we also suggest that we should be cautious about repudiating any relationship between nature and moral evaluation. The property of being natural or man-made may not per se tell us anything about an entity’s moral status, but it has an important impact on the moral relationship between the creator and the created organism.

  • 315. Smajdor, Anna
    et al.
    Cutas, Daniela
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Takala, Tuija
    Transgressing nature?: Ethics and artificial gametes2018Other (Other (popular science, discussion, etc.))
  • 316.
    Spörndly, Robert
    et al.
    Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Representation of Ethnic Minoritites in Swedish Clinical Cancer Trials: A Qualitative Study of Physicians' Experiences2018In: Harvard Public Health Review, Vol. 20, p. 1-18Article in journal (Refereed)
    Abstract [en]

    International literature shows ethnic minorities and immigrants being underrepresented in clinical trials. This compromises the generalizability of the results and distributes the benefits of participating unequally. This problem is unexplored in Sweden. Therefore, this explorative qualitative study examines the barriers Swedish physicians encounter, the strategies they use to prevent and circumvent the issue, and the attitudes and perceptions they have. We found that physicians do encounter ethnic minority patients that they exclude from participation in clinical cancer trials. This is primarily because of language barriers preventing patients from understanding participant information. Conscious strategies to counter this are lacking. A lack of translated material and strict inclusion criteria are two obstacles that can be overcome. The general conception is that this issue is uncommon and unimportant from a medical perspective, but questions of fairness have been raised. For such reasons, further discussion and research on this issue are needed.

  • 317.
    Sriver, Ryan L.
    et al.
    Univ Illinois, Dept Atmospher Sci, Urbana, IL 61801 USA..
    Lempert, Robert J.
    RAND Corp, Santa Monica, CA USA..
    Wikman-Svahn, Per
    KTH, School of Architecture and the Built Environment (ABE), Philosophy and History. Penn State Univ, Earth & Environm Syst Inst, University Pk, PA 16802 USA..
    Keller, Klaus
    Penn State Univ, Earth & Environm Syst Inst, University Pk, PA 16802 USA.;Penn State Univ, Dept Geosci, University Pk, PA 16802 USA.;Carnegie Mellon Univ, Dept Engn & Publ Policy, Pittsburgh, PA 15213 USA..
    Characterizing uncertain sea-level rise projections to support investment decisions2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 2, article id e0190641Article in journal (Refereed)
    Abstract [en]

    Many institutions worldwide are considering how to include uncertainty about future changes in sea-levels and storm surges into their investment decisions regarding large capital infrastructures. Here we examine how to characterize deeply uncertain climate change projections to support such decisions using Robust Decision Making analysis. We address questions regarding how to confront the potential for future changes in low probability but large impact flooding events due to changes in sea-levels and storm surges. Such extreme events can affect investments in infrastructure but have proved difficult to consider in such decisions because of the deep uncertainty surrounding them. This study utilizes Robust Decision Making methods to address two questions applied to investment decisions at the Port of Los Angeles: (1) Under what future conditions would a Port of Los Angeles decision to harden its facilities against extreme flood scenarios at the next upgrade pass a cost-benefit test, and (2) Do sea-level rise projections and other information suggest such conditions are sufficiently likely to justify such an investment? We also compare and contrast the Robust Decision Making methods with a full probabilistic analysis. These two analysis frameworks result in similar investment recommendations for different idealized future sea-level projections, but provide different information to decision makers and envision different types of engagement with stakeholders. In particular, the full probabilistic analysis begins by aggregating the best scientific information into a single set of joint probability distributions, while the Robust Decision Making analysis identifies scenarios where a decision to invest in near-term response to extreme sea-level rise passes a cost-benefit test, and then assembles scientific information of differing levels of confidence to help decision makers judge whether or not these scenarios are sufficiently likely to justify making such investments. Results highlight the highly-localized and context dependent nature of applying Robust Decision Making methods to inform investment decisions.

  • 318.
    Stack, Rebecca J.
    et al.
    Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England.;Nottingham Trent Univ, Div Psychol, Nottingham, England..
    Stoffer, Michaela
    Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria.;Univ Appl Sci Hlth Profess, Upper Austria, Austria..
    Englbrecht, Mathias
    Univ Erlangen Nurnberg, Dept Internal Med 3, Erlangen, Germany..
    Mosor, Erika
    Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria..
    Falahee, Marie
    Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England..
    Smolen, Josef
    Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria..
    Schett, Georg
    Univ Erlangen Nurnberg, Dept Internal Med 3, Erlangen, Germany..
    Buckley, Chris D.
    Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England.;Nottingham Trent Univ, Div Psychol, Nottingham, England..
    Kumar, Kanta
    Univ Manchester, Sch Nursing, Fac Med & Human Sci, Manchester, Lancs, England..
    Hansson, Mats
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hueber, Axel
    Univ Erlangen Nurnberg, Dept Internal Med 3, Erlangen, Germany..
    Stamm, Tanja
    Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria..
    Raza, Karim
    Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Dept Rheumatol, Birmingham, W Midlands, England..
    Perceptions of risk and predictive testing held by the first-degree relatives of patients with rheumatoid arthritis in England, Austria and Germany: a qualitative study2016In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 6, article id e010555Article in journal (Refereed)
    Abstract [en]

    Objectives The family members of patients with rheumatoid arthritis (RA) are at increased risk of developing RA and are potential candidates for predictive testing. This study explored the perceptions of first-degree relatives of people with RA about being at risk of RA and engaging in predictive testing. Methods 34 first-degree relatives (siblings and offspring) of patients with RA from the UK, Germany and Austria participated in semistructured interviews about their perceptions of RA risk and the prospect of predictive testing. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results First-degree relatives were aware of their susceptibility to RA, but were unsure of the extent of their risk. When considering their future risk, some relatives were concerned about the potential impact that RA would have on their lives. Relatives were concerned that knowing their actual risk would increase their anxiety and would affect decisions about their future. Also, relatives were concerned about the levels of uncertainty associated with predictive testing. Those in favour of knowing their future risk felt that they would need additional support to understand the risk information and cope with the emotional impact of this information. Conclusions Identifying individuals at risk of RA may allow targeted interventions to reduce the risk and consequence of future disease; however, relatives have concerns about predictive testing and risk information. The development of strategies to quantify and communicate risk needs to take these views into account and incorporate approaches to mitigate concerns and minimise the psychological impact of risk information.

  • 319.
    Stahl, Bernd Carsten
    et al.
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Akintoye, Simisola
    De Montfort Univ, Leicester De Montfort Law Sch, Leicester, Leics, England.
    Fothergill, Tyr
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    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. Karolinska Inst, Dept Neurobiol Care Sci & Soc, Div Neurogeriat, Solna, Sweden; Univ Chile, Dept Bioeth & Med Humanities, Santiago, Chile.
    Knight, Will
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Ulnicane, Inga
    De Montfort Univ, Ctr Comp & Social Responsibil, Leicester, Leics, England.
    Beyond Research Ethics: Dialogues in Neuro-ICT Research2019In: Frontiers in Human Neuroscience, ISSN 1662-5161, E-ISSN 1662-5161, Vol. 13, article id 105Article, review/survey (Refereed)
    Abstract [en]

    The increasing use of information and communication technologies (ICTs) to help facilitate neuroscience adds a new level of complexity to the question of how ethical issues of such research can be identified and addressed. Current research ethics practice, based on ethics reviews by institutional review boards (IRB) and underpinned by ethical principlism, has been widely criticized. In this article, we develop an alternative way of approaching ethics in neuro-ICT research, based on discourse ethics, which implements Responsible Research and Innovation (RRI) through dialogues. We draw on our work in Ethics Support, using the Human Brain Project (HBP) as empirical evidence of the viability of this approach.

  • 320.
    Stenvinkel, Peter
    et al.
    Renal Medicine, CLINTEC, Stockholm, Sweden.
    Kindberg, Jonas
    Institutionen för vilt, fisk och miljö, Sveriges lantbruksuniversitet, Umeå, Sweden.
    Fröbert, Ole
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Kardiologiska kliniken .
    Biomimetik [Biomimetics]: att efterlikna naturen for att forebygga sjukdom [imitating nature to prevent disease]2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DAYRArticle in journal (Refereed)
  • 321. Sterckx, Sigrid
    et al.
    Cockbain, Julian
    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.
    Huys, Isabelle
    Borry, Pascal
    "Trust is not something you can reclaim easily": patenting in the field of direct-to-consumer genetic testing.2013In: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366, Vol. 15, no 5, p. 382-7Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Recently, 23andMe announced that it had obtained its first patent, related to "polymorphisms associated with Parkinson's disease" (US-B-8187811). This announcement immediately sparked controversy in the community of 23andMe users and research participants, especially with regard to issues of transparency and trust. The purpose of this article was to analyze the patent portfolio of this prominent direct-to-consumer genetic testing company and discuss the potential ethical implications of patenting in this field for public participation in Web-based genetic research.

    METHODS: We searched the publicly accessible patent database Espacenet as well as the commercially available database Micropatent for published patents and patent applications of 23andMe.

    RESULTS: Six patent families were identified for 23andMe. These included patent applications related to: genetic comparisons between grandparents and grandchildren, family inheritance, genome sharing, processing data from genotyping chips, gamete donor selection based on genetic calculations, finding relatives in a database, and polymorphisms associated with Parkinson disease.

    CONCLUSION: An important lesson to be drawn from this ongoing controversy seems to be that any (private or public) organization involved in research that relies on human participation, whether by providing information, body material, or both, needs to be transparent, not only about its research goals but also about its strategies and policies regarding commercialization.

  • 322.
    Stjernschantz Forsberg, Joanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Biobank Research: Individual Rights and Public Benefit2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The aim of this thesis is to investigate the relationship between individuals and society in the context of healthcare and medical research, more specifically concerning the rights and duties of individuals in regard to biobank-based research. My starting point is that we all have a strong vested interest in improved healthcare, and therefore the possibilities to conduct important research should be optimized. In the first article, I investigate whether individual results from research using samples in large-scale biobanks should be returned. I conclude that there is good reason not to implement such policies, and instead to allocate available resources to pursuing medical advances. In the second article, I compare consent for using stored samples in research with consent for organ donation, whereby many countries have adopted opt-out strategies in order to increase the number of organs available. I claim that the default position should be changed in biobank research as well, i.e. it should be presumed that individuals want to contribute rather than that they do not. In the third article, I argue that safeguarding autonomy by requiring informed consent for using samples in research not only defeats the interests of society but also runs counter to the interests of the individuals the policy purports to protect. Finally, in the fourth article I suggest that it is reasonable to view participation in medical research from the perspective of a social contract, built on our mutual need for medical advances, and that this implies that there is a moral duty to adhere to the contract by allowing one’s samples to be used in research. A central conclusion in this thesis is that biobank research should be viewed as a natural part of healthcare, like quality control, method development and teaching, and that as such, it ought to be endorsed and facilitated.

  • 323.
    Stjernschantz Forsberg, Joanna
    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.
    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.
    Why participating in (certain) scientific research is a moral duty2014In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 40, no 5, p. 325-328Article in journal (Refereed)
    Abstract [en]

    Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, participating in research should be viewed from the perspective of a social contract, based on our mutual need for medical advances.

  • 324.
    Stjernschantz Forsberg, Joanna
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    International guidelines on biobank research leave researchers in ambiguity: why is this so?2013In: European Journal of Epidemiology, ISSN 0393-2990, E-ISSN 1573-7284, Vol. 28, no 6, p. 449-451Article in journal (Refereed)
  • 325. Su, Yeyang
    et al.
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Borry, Pascal
    Users' motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories.2011In: Journal of community genetics, ISSN 1868-6001, Vol. 2, no 3, p. 135-46Article in journal (Refereed)
    Abstract [en]

    The relatively rapid growth of the direct-to-consumer (DTC) genetic testing market in the last few years has led to increasing attention from both the scientific community and policy makers. One voice often missing in these debates, however, is that of the actual user of these genetic testing services. In order to gain a better picture of the motivations and expectations that propel individuals to purchase DTC genome-wide testing, we conducted an exploratory study based on users' personal stories. Through qualitative content analysis of users' personal stories found on Internet blogs and DTC genetic testing companies' websites, we identified five major sets of motivations and expectations towards DTC genome-wide testing. These themes are related to (1) health, (2) curiosity and fascination, (3) genealogy, (4) contributing to research, and (5) recreation. Obtaining such information can help us to understand how users consider genome-wide testing and forms the basis for further research.

  • 326.
    Svantesson, Mia
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    de Snoo-Trimp, Janine C.
    Department of Medical Humanities, VU Medical Centre, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
    Ursin, Göril
    Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway.
    de Vet, Henrica Cw
    Department of Epidemiology and Biostatistics, VU Medical Centre, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
    Brinchmann, Berit S.
    Nordland Hospital Trust, Nord University, Bodø, Norway.
    Molewijk, Bert
    Department of Medical Humanities, VU Medical Centre, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands; Center of Medical Ethics, Institute of Health and Society, University of Oslo, Oslo, Norway.
    Important outcomes of moral case deliberation: a Euro-MCD field survey of healthcare professionals' priorities2019In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, article id medethics-2018-104745Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: There is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation (MCD). Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument (Euro-MCD) instrument to examine the importance of various MCD outcomes, according to healthcare professionals, prior to participation.

    METHODS: A North European field survey among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.

    RESULTS: All outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%-97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. 'Better interactions with patient/family' emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.

    CONCLUSIONS: attitude outcomes, should still be included. In the future, a combination of empirical findings (practice) and normative reflection (theories) will contribute to the revision of the instrument.

  • 327.
    Svantesson, Mia
    et al.
    Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro University, Örebro, Sweden; Karlskoga Hospital, Karlskoga, Sweden.
    Karlsson, Jan
    Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden; Department of Medicine, Örebro University Hospital, Örebro, Sweden.
    Boitte, Pierre
    Dept Eth, Ctr Med Eth, Catholic Univ, Lille, France.
    Schildman, Jan
    NRW Jr Res Grp Med Eth End Life Norm & Empiricism, Inst Med Eth & Hist Med, Ruhr Univ Bochum, Bochum, Germany.
    Dauwerse, Linda
    Med Ctr, Inst Hlth & Care Res, Vrije Univ, Amsterdam, Netherlands; Dept Sociol, Vrije Univ, Amsterdam, Netherlands.
    Widdershoven, Guy
    Med Ctr, Inst Hlth & Care Res, Vrije Univ, Amsterdam, Netherlands; Dept Sociol, Vrije Univ, Amsterdam, Netherlands.
    Pedersen, Reidar
    Inst Hlth & Soc, Ctr Med Eth, Univ Oslo, Oslo, Norway.
    Huisman, Martijn
    Dept Epidemiol & Biostat, Vumc & Emgo, Amsterdam, Netherlands; Dep Med Humanities, Vumc & Emgo, Amsterdam, Netherlands .
    Molewijk, Bert
    Med Ctr, Inst Hlth & Care Res, Vrije Univ, Amsterdam, Netherlands; Dept Sociol, Vrije Univ, Amsterdam, Netherlands; nst Hlth & Soc, Ctr Med Eth, Univ Oslo, Oslo, Norway .
    Outcomes of Moral Case Deliberation: the development of an evaluation instrument for clinical ethics support (the Euro-MCD)2014In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 15, article id 30Article in journal (Refereed)
    Abstract [en]

    Background: Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers' experiences and perceived importance of outcomes of Moral Case Deliberation.

    Methods: A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through `think-aloud' interviews and a method using Content Validity Index.

    Results: The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant's first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results.

    Conclusions: A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study.

  • 328.
    Svantesson-Sandberg, Mia
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University of Warwick, Coventry, UK.
    Griffiths, Frances
    University of Warwick, Coventry, UK.
    Bassford, Chris
    University of Warwick, Coventry, UK.
    Slowther, Anne
    University of Warwick, Coventry, UK.
    Values in conict during the decision making process surrounding admission to intensive care: Ethnographic study in six British hospitals2017Conference paper (Refereed)
  • 329.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    A Defense of the Phenomenological Account of Health and Illness2019In: Journal of Medicine and Philosophy, ISSN 0360-5310, E-ISSN 1744-5019, Vol. 44, no 4, p. 459-478Article in journal (Refereed)
    Abstract [en]

    A large slice of contemporary phenomenology of medicine has been devoted to developing an account of health and illness that proceeds from the first-person perspective when attempting to understand the ill person in contrast and connection to the third-person perspective on his/her diseased body. A proof that this phenomenological account of health and illness, represented by philosophers, such as Drew Leder, Kay Toombs, Havi Carel, Hans-Georg Gadamer, Kevin Aho, and Fredrik Svenaeus, is becoming increasingly influential in philosophy of medicine and medical ethics is the criticism of it that has been voiced in some recent studies. In this article, two such critical contributions, proceeding from radically different premises and backgrounds, are discussed: Jonathan Sholl's naturalistic critique and Talia Welsh's Nietzschean critique. The aim is to defend the phenomenological account and clear up misunderstandings about what it amounts to and what we should be able to expect from it.

  • 330.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Empathy as a necessary condition of phronesis: a line of thought for medical ethics2014In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 17, no 2, p. 293-299Article in journal (Refereed)
    Abstract [en]

    Empathy is a thing constantly asked for and stressed as a central skill and character trait of the good physician and nurse. To be a good doctor or a good nurse one needs to be empathic-one needs to be able to feel and understand the needs and wishes of patients in order to help them in the best possible way, in a medical, as well as in an ethical sense. The problem with most studies of empathy in medicine is that empathy is poorly defined and tends to overlap with other related things, such as emotional contagion, sympathy, or a caring personality in general. It is far from clear how empathy fits into the general picture of medical ethics and the framework of norms that are most often stressed there, such as respect for autonomy and beneficience. How are we to look upon the role and importance of empathy in medical ethics? Is empathy an affective and/or cognitive phenomenon only, or does it carry moral significance in itself as a skill and/or virtue? How does empathy attain moral importance for medicine? In this paper I will attempt to show that a comparison with the Aristotelian concept of phronesis makes it easier to see what empathy is and how it fits into the general picture of medical ethics. I will argue that empathy is a basic condition and source of moral knowledge by being the feeling component of phronesis, and, by the same power, it is also a motivation for acting in a good way.

  • 331.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    En revolution för reproduktionen2014In: Svenska Dagbladet, ISSN 1101-2412, no 18 juniArticle in journal (Other (popular science, discussion, etc.))
  • 332.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Livet, tänkandet och driften mot oordning2013In: Svenska Dagbladet, ISSN 1101-2412, no 18 novemberArticle in journal (Other (popular science, discussion, etc.))
  • 333.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Phenomenological bioethics: medical technologies, human suffering, and the meaning of being alive2017Book (Other academic)
  • 334.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Phenomenology of pregnancy and the ethics of abortion2018In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, no 1, p. 77-87Article in journal (Refereed)
    Abstract [en]

    In this article I investigate the ways in which phenomenology could guide our views on the rights and/or wrongs of abortion. To my knowledge very few phenomenologists have directed their attention toward this issue, although quite a few have strived to better understand and articulate the strongly related themes of pregnancy and birth, most often in the context of feminist philosophy. After introducing the ethical and political contemporary debate concerning abortion, I introduce phenomenology in the context of medicine and the way phenomenologists have understood the human body to be lived and experienced by its owner. I then turn to the issue of pregnancy and discuss how the embryo or foetus could appear for us, particularly from the perspective of the pregnant woman, and what such showing up may mean from an ethical perspective. The way medical technology has changed the experience of pregnancy-for the pregnant woman as well as for the father and/or other close ones-is discussed, particularly the implementation of early obstetric ultra-sound screening and blood tests (NIPT) for Down's syndrome and other medical defects. I conclude the article by suggesting that phenomenology can help us to negotiate an upper time limit for legal abortion and, also, provide ways to determine what embryo-foetus defects to look for and in which cases these should be looked upon as good reasons for performing an abortion.

  • 335.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Psykiatrins etik2016In: Psykiatri / [ed] Jörgen Herlofson et al., Lund: Studentlitteratur AB, 2016, 2 omarb., p. 69-75Chapter in book (Refereed)
  • 336.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    På spaning efter det goda dödandet2015In: Svenska Dagbladet, ISSN 1101-2412, no 5 novemberArticle in journal (Other (popular science, discussion, etc.))
  • 337.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Communication, Centre for Studies in Practical Knowledge.
    The Body as Gift, Resource or Commodity?: Heidegger and the Ethics of Organ Transplantation2010In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 7, no 2, p. 163-172Article in journal (Refereed)
    Abstract [en]

    Three metaphors appear to guide contemporary thinking about organ transplantation. Although the gift is the sanctioned metaphor for donating organs, the underlying perspective from the side of the state, authorities and the medical establishment often seems to be that the body shall rather be understood as a resource. The acute scarcity of organs, which generates a desperate demand in relation to a group of potential suppliers who are desperate to an equal extent, leads easily to the gift’s becoming, in reality, not only a resource, but also a commodity. In this paper, the claim is made that a successful explication of the gift metaphor in the case of organ transplantation and a complementary defence of the ethical primacy of the giving of organs need to be grounded in a philosophical anthropology which considers the implications of embodiment in a different and more substantial way than is generally the case in contemporary bioethics. I show that Heidegger’s phenomenology offers such an alternative, with the help of which we can understand why body parts could and, indeed, under certain circumstances, should be given to others in need, but yet are neither resources nor properties to be sold. The phenomenological exploration in question is tied to fundamental questions about what kind of relationship we have to our own bodies, as well as about what kind of relationship we have to each other as human beings sharing the same being-in-the-world as embodied creatures.

  • 338.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    The phenomenology of empathy in medicine: an introduction2014In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 17, no 2, p. 245-248Article in journal (Refereed)
    Abstract [en]

    This article is an introduction to a thematic section on the phenomenology of empathy in medicine, attempting to provide an expose of the field. It also provides introductions to the individual articles of the thematic section.

  • 339.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    To die well: the phenomenology of suffering and end of life ethics2019In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633Article in journal (Refereed)
    Abstract [en]

    The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one's life. The suffering can also be related to no longer being able to be the person one wants to be in the eyes of others, to losing one's dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient's body. Matters of physician assisted suicide and/or euthanasia-if it should be legalized and if so under which conditions-need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized.

  • 340.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Vi har förlorat känslan för lidandet2015In: Svenska Dagbladet, ISSN 1101-2412, no 20 oktoberArticle in journal (Other (popular science, discussion, etc.))
  • 341.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Education, Centre for Studies in Practical Knowledge.
    Vi ser inte människan för alla kroppsdelar2013In: Svenska Dagbladet, ISSN 1101-2412, no 12 marsArticle in journal (Other (popular science, discussion, etc.))
  • 342.
    Svenaeus, Fredrik
    Södertörn University, School of Culture and Communication, Centre for Studies in Practical Knowledge.
    What is an organ?: Heidegger and the phenomenology of organ transplantation2010In: Theoretical Medicine and Bioethics, ISSN 1386-7415, E-ISSN 1573-0980, Vol. 31, no 3, p. 179-196Article in journal (Refereed)
    Abstract [en]

    This paper investigates the question of what an organ is from a phenomenological perspective. Proceeding from the phenomenology of being-in-the-world developed by Heidegger in Being and Time and subsequent works, it compares the being of the organ with the being of the tool. It attempts to display similarities and differences between the embodied nature of the organs and the way tools of the world are handled. It explicates the way tools belong to the totalities of things of the world that are ready to use and the way organs belong to the totality of a bodily being able to be in this very world. In so doing, the paper argues that while the organ is in some respects similar to a bodily tool, this tool is nonetheless different from the tools of the world in being tied to the organism as a whole, which offers the founding ground of the being of the person. However, from a phenomenological point of view, the line between organs and tools cannot simply be drawn by determining what is inside and outside the physiological borders of the organism. We have, from the beginning of history, integrated technological devices (tools) in our being-in-the-world in ways that make them parts of ourselves rather than parts of the world (more organ- than tool-like), and also, more recently, have started to make our organs more tool-like by visualising, moving, manipulating, and controlling them through medical technology. In this paper, Heidegger’s analysis of organ, tool, and world-making is confronted with this development brought about by contemporary medical technology. It is argued that this development has, to a large extent, changed the phenomenology of the organ in making our bodies more similar to machines with parts that have certain functions and that can be exchanged. This development harbours the threat of instrumentalising our bodily being but also the possibility of curing or alleviating suffering brought about by diseases which disturb and destroy the normal functioning of our organs.

  • 343.
    Svensson, Ove
    et al.
    Halmstad University, School of Education, Humanities and Social Science, Center for Social Analysis (CESAM), Social Change, Learning and Social Relations (SLSR). Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Hallberg, Lillemor
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Hunting for health, well-being, and quality of life2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 2, article id 7137Article in journal (Refereed)
    Abstract [en]

    Health, well-being, quality of life, and lifestyle are central concepts within health science, although generally accepted definitions are still lacking. Lifestyle can either be seen as an independent variable and the cause of unhealthy behaviour or as a dependent variable, which is affected by conditions in the society. In the first case, the attention is directed on each individual case: maintaining or improving health requires changes in lifestyle and living habits. In this perspective, diet and physical activity are important features for health promotion. In the second case the attention is rather directed on structural conditions in society, for example the food industry, the lunches for children at school, and the "fast food" industry should be influenced to protect human health. The structural perspective has, so far, received restricted impact when it concerns prevention and promotion of health. Processes of individualisation in the society have to an increasing extent viewed health as an affair for the individual. The benefits of physical activity, healthy food and beverage, social support, and joy are documented scientifically. In general, the trend towards increasing responsibility for one's lifestyle and health is positive, but might reinforce the inequality in health. With an even harder climate in society there might be a risk that individual health projects undermine the solidarity and the will to accept costs for medical treatment and care for people who risk their health through an unhealthy and risk-taking lifestyle. However, we argue that peoples' well-being and quality of life presupposes a society that stands up for all people.

  • 344.
    Swahnberg, Katarina
    et al.
    Hälsouniversitetet, Linköping.
    Berterö, Carina
    Minimizing human dignity: staff perception of abuse in health care2012In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 7, no 1, p. 33-38Article in journal (Refereed)
    Abstract [en]

    In earlier studies we have shown that abuse in health care (AHC) is commonly reported among both male and female patients. In this study, we present an evaluation of an intervention against AHC based on Forum Play. The evaluation was conducted by means of pre- and postintervention interviews with the staff at a woman's clinic. The interviews were analysed using the constant comparative method. The results of this postintervention study stand out in loud contrast to the results of the preintervention studies. Staff had moved from a distant and fluctuating awareness of AHC to a standpoint characterized by both moral imagination and a sense of responsibility.

  • 345. Swartling, Ulrica
    et al.
    Helgesson, Gert
    Ludvigsson, Johnny
    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.
    Nordgren, Anders
    Children's Views on Long-Term Screening for Type 1 Diabetes2014In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 9, no 4, p. 1-9Article in journal (Refereed)
    Abstract [en]

    There are an increasing number of medical research studies involving children, including many long-term birth cohort studies. Involving children raises many issues, and little is known about children's own views. This study explored children's views (N = 5,851) on participation in a long-term screening study for type 1 diabetes. The results show that children 10 to 13 years of age have in general a positive attitude to pediatric research and emphasized trust in researchers. The children stressed the importance to receive information and to be involved in decisions. The children also reported feeling concerned about blood sampling and disease risk. Researchers involved in long-term pediatric research need to address these issues to promote involvement and decrease worry.

  • 346. Thompson, Rachel
    et al.
    Johnston, Louise
    Taruscio, Domenica
    Monaco, Lucia
    Beroud, Christophe
    Gut, Ivo G.
    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.
    't Hoen, Peter-Bram A.
    Patrinos, George P.
    Dawkins, Hugh
    Ensini, Monica
    Zatloukal, Kurt
    Koubi, David
    Heslop, Emma
    Paschall, Justin E.
    Posada, Manuel
    Robinson, Peter N.
    Bushby, Kate
    Lochmueller, Hanns
    RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research2014In: Journal of general internal medicine, ISSN 0884-8734, E-ISSN 1525-1497, Vol. 29, p. S780-S787Article, review/survey (Refereed)
    Abstract [en]

    Research into rare diseases is typically fragmented by data type and disease. Individual efforts often have poor interoperability and do not systematically connect data across clinical phenotype, genomic data, biomaterial availability, and research/trial data sets. Such data must be linked at both an individual-patient and whole-cohort level to enable researchers to gain a complete view of their disease and patient population of interest. Data access and authorization procedures are required to allow researchers in multiple institutions to securely compare results and gain new insights. Funded by the European Union's Seventh Framework Programme under the International Rare Diseases Research Consortium (IRDiRC), RD-Connect is a global infrastructure project initiated in November 2012 that links genomic data with registries, biobanks, and clinical bioinformatics tools to produce a central research resource for rare diseases.

  • 347.
    Thyberg, Ingrid
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Inflammation Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Rheumatology.
    Opava, C
    Rehabilitering vid reumatisk sjukdom2011In: Reumatologi / [ed] Lars Klareskog, Tore Saxne, Yvonne Enman, 2011, 2, p. 423-Chapter in book (Other academic)
  • 348.
    Tinghög, Gustav
    Linköping University, Department of Management and Engineering, Economics. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Discounting, Preferences, and Paternalism in Cost-Effectiveness Analysis2012In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 20, no 3, p. 297-318Article in journal (Refereed)
    Abstract [en]

    When assessing the cost effectiveness of health care programmes, health economists typically presume that distant events should be given less weight than present events. This article examines the moral reasonableness of arguments advanced for positive discounting in costeffectiveness analysis both from an intergenerational and an intrapersonal perspective and assesses if arguments are equally applicable to health and monetary outcomes. The article concludes that behavioral effects related to time preferences give little or no reason for why society at large should favour the present over the future when making intergenerational choices regarding health. The strongest argument for discounting stems from the combined argument of diminishing marginal utility in the presence of growth. However, this hinges on the assumption of actual growth in the relevant good. Moreover, current modern democracy may be insufficiently sensitive to the concerns of future generations. The second part of the article categorises preference failures (which justify paternalistic responses) into two distinct groups, myopic and acratic. The existence of these types of preference failures makes elicited time preferences of little normative relevance when making decisions regarding the social discount rate, even in an intrapersonal context. As with intergenerational discounting, the combined arguments of growth and diminishing marginal utility offer the strongest arguments for discounting in the intrapersonal context. However, there is no prima facie reason to assume that this argument should apply equally to health and monetary values. To be sure, selecting an approach towards discounting health is a complex matter. However, the life-ordeath implications of any approach require that the discussion not be downplayed to merely a technical matter for economists to settle.

  • 349.
    Tännsjö, Torbjörn
    Stockholm University, Faculty of Humanities, Department of Philosophy.
    Ought We to Enhance Our Cognitive Capacities?2009In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 23, no 7, p. 421-432Article in journal (Refereed)
    Abstract [en]

    Ought we to enhance our cognitive capacities beyond the normal human range? There is no denying that it might be a good idea to level out differences between people with respect to cognitive capacities, and there is no denying that some persons' reaching beyond normal capacities may have some good side-effects on society at large (but also bad side-effects, of course). But is there any direct gain to be made by having ones cognitive capacities enhanced? Will this as such make our lives go better? No, I argue, or, at least, there doesn't seem to exist any evidence suggesting that it would. And it doesn't matter whether we consider the question from a narrow hedonistic perspective, from a more refined hedonistic perspective, from a desire-satisfaction view, or if we adopt some reasonable objective list view of what makes a life go well. Only on an extremely perfectionist — and implausible —view of what makes our lives go well could any direct value in cognitive enhancement find support. Finally, there are no good reasons to do with our sense of identity to enhance even our capacity to remember. So, cognitive enhancement as such would not make our lives go any better.

  • 350.
    Valenzuela, Sergio
    et al.
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Aliaga, Verónica
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Burdiles, Patricio
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Carvallo, Aurelio
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Díaz, Eduardo
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Guerrero, Manuel
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Rueda, Laura
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Valenzuela, Carlos
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Reflexiones en torno a la ley N° 20.584 y sus implicancias para la investigación biomédica en Chile2015In: Revista Médica de Chile, ISSN 0034-9887, Vol. 143, no 1Article in journal (Refereed)
    Abstract [en]

    After years of discussion by the Chilean legislature, the Law Nº 20.584, which regulates health care related rights and duties of people, entered into force in Chile in October 2012. This bill represents an important step in the recognition and protection of health care related rights, welfare, dignity and duties of persons. It also intends to protect potential participants in clinical research. However, such protective measures include explicit prohibitions such as the review of clinical records or the inclusion of people with mental or psychological handicaps as research participants. We herein discuss the implications of this law in medical research.

45678 301 - 350 of 382
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