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  • 1. Cohen, J.
    et al.
    van Delden, J.
    Mortier, F.
    Löfmark, Rurik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Norup, M.
    Cartwright, C.
    Faisst, K.
    Canova, C.
    Onwuteaka-Philipsen, B.
    Bilsen, J.
    Influence of physicians' life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 4, p. 247-253Article in journal (Refereed)
    Abstract [en]

    Aim: To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient's death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.

  • 2.
    Eriksson, Stefan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Helgesson, Gert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Keep people informed or leave them alone?: A suggested tool for identifying those research participants who rightly want only limited information2005In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 31, no 11, p. 674-678Article in journal (Refereed)
    Abstract [en]

    People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants’ deliberate choices. We argue that the two explanations call for different responses.

    A tool for identifying those research participants who want limited information is presented. This consists of a restricted number of questions about trust in and appraisal of research, priority of time and privacy, and perception of a duty to participate. It is argued that an important group of participants who purposely lack understanding of the study can be identified with this tool. Some limitations to this approach are also discussed.

  • 3.
    Furberg, Elisabeth
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Zeiler, Kristin
    Welin, Stellan
    Tufveson, G
    The ethics of non-heart-beating donation: how new technology can change the ethical landscape.2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 7, p. 526-529Article in journal (Refereed)
    Abstract [en]

    The global shortage of organs for transplantation and the development of new and better medical technologies for organ preservation have resulted in a renewed interest in non-heart-beating donation (NHBD). This article discusses ethical questions related to controlled and uncontrolled NHBD. It argues that certain preparative measures, such as giving anticoagulants, should be acceptable before patients are dead, but when they have passed a point where further curative treatment is futile, they are in the process of dying and they are unconscious. Furthermore, the article discusses consequences of technological developments based on improvement of a chest compression apparatus used today to make mechanical heart resuscitation. Such technological development can be used to transform cases of non-controlled NHBD to controlled NHBD. In our view, this is a step forward since the ethical difficulties related to controlled NHBD are easier to solve than those related to non-controlled NHBD. However, such technological developments also evoke other ethical questions.

  • 4.
    Grill, Kalle
    et al.
    Division of Philosophy, KTH Royal Institute of Technology.
    Hansson, Sven Ove
    Division of Philosophy, KTH Royal Institute of Technology.
    Epistemic paternalism in Public Health2005In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 31, no 11, p. 648-653Article in journal (Refereed)
    Abstract [en]

    Receiving information about threats to one’s health can contribute to anxiety and depression. In contemporary medical ethics there is considerable consensus that patient autonomy, or the patient’s right to know, in most cases outweighs these negative effects of information. Worry about the detrimental effects of information has, however, been voiced in relation to public health more generally. In particular, information about uncertain threats to public health, from—for example, chemicals, are said to entail social costs that have not been given due consideration. This criticism implies a consequentialist argument for withholding such information from the public in their own best interest. In evaluating the argument for this kind of epistemic paternalism, the consequences of making information available must be compared to the consequences of withholding it. Consequences that should be considered include epistemic effects, psychological effects, effects on private decisions, and effects on political decisions. After giving due consideration to the possible uses of uncertain information and rebutting the claims that uncertainties imply small risks and that they are especially prone to entail misunderstandings and anxiety, it is concluded that there is a strong case against withholding of information about uncertain threats to public health.

  • 5.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Bülow, William
    Department of Philosophy, Stockholm University, Stockholm, Sweden.
    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 University College.
    Should the deceased be listed as authors?2019In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 45, no 5, p. 331-338Article in journal (Refereed)
    Abstract [en]

    Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion.

  • 6.
    Helgesson, Gert
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    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.
    Against the principle that the individual shall have priority over science2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 1, p. 54-56Article in journal (Refereed)
    Abstract [en]

    This paper highlights a feature common to many ethical guidelines-namely, the idea that the interests of the individual shall always prevail over the interests of science and society. The paper presents how some major ethical guidelines treat the balancing of research interests against those of research subjects and spells out the difficulties in interpreting the principle of the primacy of the individual in a way that can be action-guiding. It suggests various alternative interpretations of the primacy of the individual and argues that they do not hold. Finally, the implications of this analysis for ethical guidelines are discussed.

  • 7.
    Helgesson, Gert
    et al.
    Karolinska Institutet.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    The moral primacy of the human being: A reply to Parker2011In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 37, no 1, p. 56-57Article in journal (Other academic)
    Abstract [en]

    In a previous paper in the Journal of Medical Ethics, the authors argued that the research ethical principle stating that the individual shall have priority over science, found in many guidelines, is utterly unclear and because of this should be explicated or otherwise deleted. In a recent commentary, Parker argued that this leaves us defending a position that would allow totalitarian regimes to pursue glory at the expense of its citizens. The present response addresses this and similar accusations.

  • 8.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Autonomy and negatively informed consent2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 3, p. 146-149Article in journal (Refereed)
    Abstract [en]

    The requirement of informed consent (IC) to medical treatments is almost invariably justified with appeal to patient autonomy. Indeed, it is common to assume that there is a conceptual link between the principle of respect for autonomy and the requirement of IC, as in the influential work of Beauchamp and Childress. In this paper I will argue that the possible relation between the norm of respecting (or promoting) patient autonomy and IC is much weaker than conventionally conceived. One consequence of this is that it is possible to exercise your autonomy without having the amount of and the kind of information that are assumed in the standard requirement of IC to medical treatments. In particular, I will argue that with a plausible conception of patient autonomy, the respect for and the promotion of patient autonomy are in certain circumstances better protected by giving patients the right to give their negatively informed consent to medical treatments.

  • 9.
    Löfmark, Rurik
    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.
    Nilstun, T.
    Ågren Bolmsjö, I.
    From cure to palliation: concept, decision and acceptance2007In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 33, no 12, p. 685-688Article in journal (Refereed)
    Abstract [en]

    The aim of this paper is to present and discuss nurses' and physicians' comments in a questionnaire relating to patients' transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments. The respondents differed in their comments about three areas: the concept of palliative care, experiences of unclear decision-making and difficulties in acceptance of the patient's situation. The responses are analysed in terms of four ethical theories: virtue ethics, deontology, consequentialism and casuistry. Many virtues considered to be appropriate for healthcare personnel to possess were invoked. Compassion, honesty, justice and prudence are especially important. However, principles of medical ethics, such as the deontological principle of respect for self-determination and the consequence of avoidance of harm, are also implied. Casuistry may be particularly helpful in analysing certain areas of difficulty namely, what is meant by '' palliative care '', decision-making and accepting the patient's situation. Keeping a patient in a state of uncertainty often causes more suffering than necessary. Communication among the staff and with patients must be explicit. Many of the staff have not had adequate training in communicating with patients who are at the end of their life. Time for joint reflection has to be regained, and training in decision-making is essential. In our opinion, palliative care in Sweden is in need of improvement.

  • 10.
    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.

  • 11. Swartling, U.
    et al.
    Helgesson, G.
    Hansson, M. G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ludvigsson, J.
    Split views among parents regarding children's right to decide about participation in research: a questionnaire survey2009In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 35, no 7, p. 450-455Article in journal (Refereed)
    Abstract [en]

    Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

  • 12. Swartling, U.
    et al.
    Helgesson, Gert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Self-assessed understanding as a tool for evaluating consent: reflections on a longitudinal study2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 7, p. 557-562Article in journal (Refereed)
    Abstract [en]

    Based on extensive clinical questionnaire data, this paper explores the relation between research subjects' self-assessed understanding and actual knowledge of a largescale predictive screening study, and its implications for the proper handling of information and consent routines in longitudinal studies. The intitial data show that low self-assessed understanding among participants was correlated with limited knowledge, concern over participation and collected samples, less satisfaction with information, and feeling passive or negative towards the study. Among those reporting high understanding, a non-negligible number displayed a lack of knowledge regarding central aspects of the study. Regarding high assessed understanding, the multivariate analysis identified the main predictor variables to be knowledge, having a positive attitude towards participation and the study itself, being satisfied with information, having a stable psychosocial background and feeling calm regarding the handling of samples. These findings indicate that to evaluate participants' understanding through self-assessment may not be reliable method. Self-assessed understanding may rather be a good indicator of general attitudes than a tool for analysing content. The data also show that actual understanding varies considerably among participants, suggesting that more effort needs to be put into adjusting the information to the needs of different subgroups. It is argued that when doing this, researchers in longitudinal studies must be careful not to exhaust participants with excessive information that they do not want and that may cause them to drop out. The ethical relevance of obtaining repeated consents in longitudinal research is discussed.

  • 13. Söderfeldt, Ylva
    et al.
    Droppe, Adam
    Ohnhäuser, Tim
    Distress, disease, desire: perspectives on the medicalisation of premature ejaculation.2017In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 43, no 12, p. 865-866Article in journal (Refereed)
    Abstract [en]

    The discovery that certain selective serotonin reuptake inhibitors delay ejaculation and the later development and approval of dapoxetine as an on-demand treatment option has led to a dramatic increase in medical interest in premature ejaculation. This paper analyses the diagnostic criteria and the discussion within the medical community about suitable treatments against the backdrop of theories of science, sex and gender. Our conclusion is that the diagnosis itself and the suggested treatments contribute to normative models of sexual conduct and therefore reinforce the norms that cause patients' distress over ejaculating 'too soon'.

  • 14. Verkerk, M. A.
    et al.
    Lindemann, Hilde
    McLaughlin, Janice
    Scully, Jackie Leach
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nelson, Jamie
    Chin, Jacqueline
    Where families and healthcare meet2015In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 41, no 2Article in journal (Refereed)
    Abstract [en]

    Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.

  • 15. Westrin, C G
    et al.
    Nilstun, T
    Smedby, B
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Haglund, B
    Epidemiology and moral philosophy1992In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 18, no 4, p. 193-96Article in journal (Refereed)
    Abstract [en]

    To an increasing extent ethical controversies affect and sometimes obstruct public health work and epidemiological research. In order to improve communication between the concerned parties a model for identification and analysis of ethical conflicts in individual-based research has been worked out in co-operation between epidemiologists and moral philosophers. The model has two dimensions. One dimension specifies relevant ethical principles (as beneficence, non-maleficence, autonomy and justice). The other dimension specifies the groups of persons involved in the conflict under consideration (for example: the study-population, individuals who may benefit from the results, the researchers and their personnel, the community at large). The model has been applied to the problem of legitimacy of case-register research and to problems in psychiatric health services research as well as epidemiological research.

  • 16. Zeiler, K.
    et al.
    Furberg, E.
    Tufveson, Gunnar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Transplantation Surgery.
    Welin, S.
    The ethics of non-heart-beating donation: how new technology can change the ethical landscape2008In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 7, p. 526-529Article in journal (Refereed)
    Abstract [en]

    The global shortage of organs for transplantation and the development of new and better medical technologies for organ preservation have resulted in a renewed interest in non-heart-beating donation (NHBD). This article discusses ethical questions related to controlled and uncontrolled NHBD. It argues that certain preparative measures, such as giving anticoagulants, should be acceptable before patients are dead, but when they have passed a point where further curative treatment is futile, they are in the process of dying and they are unconscious. Furthermore, the article discusses consequences of technological developments based on improvement of a chest compression apparatus used today to make mechanical heart resuscitation. Such technological development can be used to transform cases of non-controlled NHBD to controlled NHBD. In our view, this is a step forward since the ethical difficulties related to controlled NHBD are easier to solve than those related to non-controlled NHBD. However, such technological developments also evoke other ethical questions.

1 - 16 of 16
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