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  • 1.
    Godskesen, Tove E.
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centre for Research Ethics & Bioethics, Uppsala University, Sweden.
    Suzanne, Petri
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    Eriksson, Stefan
    Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Halkoaho, Arja
    Tampere University of Applied Sciences, Finland.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Engelbak Nielsen, Zandra
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    The culture of hope and ethical challenges in clinical trials: A qualitative study of oncologists and haematologists’ views2019In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101XArticle in journal (Refereed)
    Abstract [en]

    We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.

  • 2.
    Godskesen, Tove E.
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Suzanne, Petri
    Danmark.
    Eriksson, Stefan
    Uppsala universitet.
    Halkoaho, Arja
    Finland.
    Mangset, Margrete
    Norge.
    Pirinen, Merja
    Finland.
    Engelbak Nielsen, Zandra
    Danmark.
    When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges2018In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, Vol. 13, no 5, p. 475-485Article in journal (Refereed)
    Abstract [en]

    This study investigated the kinds of ethical challenges experienced by nurses in oncology and hematology when nursing care and research overlap in clinical trials, and how the nurses handle such challenges. Individual interviews with 39 nurses from Sweden, Denmark, and Finland indicated that all nurses were positive about research, considering it essential for developing the best care. Ethical challenges exist, however; the most difficult were associated with the end-of-life patients, no longer responsive to standard therapy, who eagerly volunteer for cutting-edge drug trials in the hope of gaining therapeutic benefit. Many nurses lacked systematic strategies for addressing such challenges but found support from their nursing colleagues and relied on the research protocols to guide them.

  • 3.
    Godskesen, Tove
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Selektiv rapportering av kliniska prövningar2019In: Dagens Medicin, ISSN 1402-1943Article in journal (Other (popular science, discussion, etc.))
  • 4.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management, and Ethics, Karolinska Insitutet, Stockholm.
    Bülow, William
    Department of Philosophy, Stockholm University.
    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.
    Should the deceased be listed as authors?2019In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, no 0, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Sometimes participants in research collaborationdie before the paper is accepted for publication. Thequestion we raise in this paper is how authorship shouldbe handled in such situations. First, the outcome of aliterature survey is presented. Taking this as our startingpoint, we then go on to discuss authorship of the deadin relation to the requirements of the Vancouver rules.We argue that in principle the deceased can meet therequirements laid down in these authorship guidelines.However, to include a deceased researcher as authorrequires a strong justification. The more the person has been involved in the research and writing process beforehe or she passes away, the stronger the justification forinclusion.

  • 5.
    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.

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