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  • 101.
    Farisco, Michele
    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.
    Petrini, Carlo
    Misdiagnosis as an ethical and scientific challenge2014In: Annali dell'Istituto Superiore di Sanità, ISSN 0021-2571, Vol. 50, no 3, p. 229-233Article in journal (Refereed)
    Abstract [en]

    Difficulties of behavioral assessment of consciousness. An astonishingly high rateof misdiagnosis between vegetative state/unresponsive wakefulness syndrome and minimallyconscious state has been detected. This raises the issue of the adequacy of theconsciousness’ assessment in patients with disorders of consciousness. The behavioralassessment of consciousness could be not able to detect covert awareness, which is increasinglyidentified by the instrumental assessment.Ancillary methods. Neurotechnology, particularly neuroimaging, provides relevant dataconcerning the neurological underlying condition of patients with DOCs, but the instrumentalapproach has still to assess some technical issues.Ethical considerations. A correct diagnosis of a DOC is not only an instrumental issue,but also an ethically relevant demand to the scientific community. Finally, an integrationbetween behavioral and instrumental assessments seems to be the most adequate strategyin order to decrease the rate of misdiagnosis.

  • 102.
    Farisco, Michele
    et al.
    Biogem, Genetic Reseach Centre, Ariano Irpino (AV) Italy.
    Petrini, Carlo
    The Impact of Contemporary Neurotechnology on Diagnosing and Treating Patients with Disorders of Consciousness: A Review2013In: International Journal of Clinical Therapeutics and Diagnosis, ISSN 2332-2926, Vol. 1, no 2, p. 12-19Article in journal (Refereed)
    Abstract [en]

    Disorders of consciousness, especially Vegetative State, are assessed from a theoretical (historical and ethical) and empirical (neuroscientific) points of view, through a review of the most relevant recent literature. Both the potentiality of neuroscientific investigation and the limitations of its clinical (diagnostic and prognostic) application are underlined, showing the urgency of a collaboration between science, law and ethics in order to define the most appropriate nosography and to ensure the best therapy to patients with disorders of consciousness.

  • 103.
    Forsberg, Anna
    et al.
    Lund University, Lund, Sweden / Skåne University Hospital, Lund, Sweden.
    Lennerling, Anette
    Sahlgrenska University Hospital, Gothenburg, Sweden / University of Gothenburg, Göteborg, Sweden.
    Fridh, Isabell
    University of Gothenburg, Göteborg, Sweden / University of Borås, Borås, Sweden.
    Karlsson, Veronika
    University of Skövde, School of Health and Education. University of Skövde, Health and Education.
    Nilsson, Madeleine
    Sahlgrenska University Hospital, Gothenburg, Sweden.
    Understanding the Perceived Threat of the Risk of Graft Rejections: A Middle-Range Theory2015In: Global Qualitative Nursing Research, ISSN 2333-3936, Vol. 2, article id 2333393614563829Article in journal (Refereed)
    Abstract [en]

    From a clinical viewpoint, graft rejection is one of the greatest threats faced by an organ transplant recipient (OTR). We propose a middle-range theory (MRT) of Perceived Threat of the Risk of Graft Rejection (PTRGR) as a contribution to the practice of transplant nursing. It could also apply to the detection of risky protective behavior, that is, isolation, avoidance, or non-adherence. The proposed MRT covers the following concepts and the relationship between them: transplant care needs, threat reducing interventions, intervening variables, level of PTRGR, protective strategies, and evidence-based practice. Parts of this theory have been empirically tested and support the suggested relationship between some of the concepts. Further tests are needed to strengthen the theoretical links. The conceptual framework might serve as a guide for transplant nurses in their efforts to promote post-transplant health and reduce threat-induced emotions.

  • 104.
    Franklin, Lise-Lotte
    et al.
    Örebro University, Sweden.
    Ternestedt, B.-M.
    Örebro University and Ersta Sköndal College, Stockholm, Sweden.
    Nordenfelt, Lennart
    Linköping University, Department of Department of Health and Society, Tema Health and Society. Linköping University, Faculty of Arts and Sciences.
    Views on dignity of elderly nursing home residents2006In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 13, no 2, p. 130-146Article in journal (Refereed)
    Abstract [en]

    Discussion about a dignified death has almost exclusively been applied to palliative care and people dying of cancer. As populations are getting older in the western world and living with chronic illnesses affecting their everyday lives, it is relevant to broaden the definition of palliative care to include other groups of people. The aim of the study was to explore the views on dignity at the end of life of 12 elderly people living in two nursing homes in Sweden. A hermeneutic approach was used to interpret the material, which was gathered during semi-structured interviews. A total of 39 interviews were transcribed. The analysis revealed three themes: (1) the unrecognizable body, (2) fragility and dependency, and (3) inner strength and a sense of coherence. © 2006 Edward Arnold (Publishers) Ltd.

  • 105.
    Frostell, Claes
    et al.
    Danderyd Hospital, Karolinska Institutet.
    Björling, Gunilla
    The Swedish Red Cross University College, Department of Nursing and Care. Danderyd Hospital, Karolinska Institutet.
    Strömberg, Emma
    KTH.
    Karlsson, Sigbritt
    KTH.
    Aune, Ragnhild E
    Norwegian University of Science and Technology, Trondheim, Norway.
    Tracheal implants revisited2017In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 389, no 10075, p. 1191-Article in journal (Other (popular science, discussion, etc.))
  • 106.
    Furingsten, Lovisa
    et al.
    Dalarna University.
    Sjögren, Reet
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Mälardalen University.
    Forsner, Maria
    Dalarna University.
    Ethical challenges when caring for dying children2015In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 22, no 2, p. 176-187Article in journal (Refereed)
    Abstract [en]

    Background: Caring for dying children presents special challenges, according to the children themselves, their relatives and healthcare professionals. Objective: The aim of this study was to describe caring as represented in healthcare workers' experiences of caring for dying children. Method: A phenomenological approach was chosen, in-depth interviews were carried out and data were analysed in four steps focusing on (a) open reading, (b) meaning units, (c) constituents and (d) essence. Ethical considerations: Four nurses in a general acute paediatric care setting in Sweden participated after providing written informed consent. Voluntary participation and confidentiality were ensured, and the study was ethically approved. Findings: The essence of caring for dying children was likened to a musically attuned composition, comprising five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. Presence was found to be a prerequisite for caring when a child is dying. Self-knowledge and support from others can be of help when struggling with emotional pain and injustice. Discussion: Caring for dying children has been found to be a delicate task for healthcare workers all over the world, and the ethical dimension is emphasized in international research. In this study, emotional pain and suffering accompanied caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient's needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Conclusion: Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying.

  • 107.
    Gainotti, Sabina
    et al.
    Ist Super Sanita, Natl Ctr Rare Dis, Vle Regina Elena 299, I-00162 Rome, Italy.
    Turner, Cathy
    Newcastle Univ, Inst Med Genet, Int Ctr Life, Newcastle Upon Tyne, Tyne & Wear, England.
    Woods, Simon
    Newcastle Univ, PEALS Policy Eth & Life Sci Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England.
    Kole, Anna
    Rare Dis Europe, EURORDIS, Paris, France.
    McCormack, Pauline
    Newcastle Univ, PEALS Policy Eth & Life Sci Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England.
    Lochmüller, Hanns
    Newcastle Univ, Inst Med Genet, Int Ctr Life, Newcastle Upon Tyne, Tyne & Wear, England.
    Riess, Olaf
    Univ Tubingen, Inst Human Genet & Appl Genom, Tubingen, Germany.
    Straub, Volker
    Newcastle Univ, Inst Med Genet, Int Ctr Life, Newcastle Upon Tyne, Tyne & Wear, England.
    Posada, Manuel
    SpainRDR, Inst Rare Dis Res, Madrid, Spain; ISCIII, CIBERER, Madrid, Spain.
    Taruscio, Domenica
    Ist Super Sanita, Natl Ctr Rare Dis, Vle Regina Elena 299, I-00162 Rome, Italy.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. EURAC Res, Ctr Biomed, Bolzano, Italy.
    Improving the informed consent process in international collaborative rare disease research: effective consent for effective research2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 9, p. 1248-1254Article in journal (Refereed)
    Abstract [en]

    The increased international sharing of data in research consortia and the introduction of new technologies for sequencing challenge the informed consent (IC) process, adding complexities that require coordination between research centres worldwide. Rare disease consortia present special challenges since available data and samples may be very limited. Thus, it is especially relevant to ensure the best use of available resources but at the same time protect patients' right to integrity. To achieve this aim, there is an ethical duty to plan in advance the best possible consent procedure in order to address possible ethical and legal hurdles that could hamper research in the future. Therefore, it is especially important to identify key core elements (CEs) to be addressed in the IC documents for international collaborative research in two different situations: (1) new research collections (biobanks and registries) for which information documents can be created according to current guidelines and (2) established collections obtained without IC or with a previous consent that does not cover all CEs. We propose here a strategy to deal with consent in these situations. The principles have been applied and are in current practice within the RD-Connect consortia - a global research infrastructure funded by the European Commission Seventh Framework program but forward looking in terms of issues addressed. However, the principles established, the lessons learned and the implications for future research are of direct relevance to all internationally collaborative rare-disease projects.

  • 108. Garland, Jameson
    Ethical and Legal Aspects of DSD/Intersex2018In: Encyclopedia of Endocrine Diseases / [ed] Ilpo Huhtaniemi and Luciano Martini, London: Elsevier, 2018, 2ndChapter in book (Refereed)
  • 109. Gini, Adriana
    et al.
    Larrivee, Denis
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sironi, Vittorio
    Keeping the human: neuroethics and the conciliation of dissonant values in the 21st century2015In: Neuroscience and neuroeconomics, ISSN 2230-3561, Vol. 4, p. 1-10Article in journal (Refereed)
    Abstract [en]

    Studied since antiquity, the human brain has recently been the inspiration for an international neuroscientific entrepreneurship, the Human Brain Project in Europe and the Brain Research through Advancing Innovative Neurotechnologies initiative in the USA. Different in their approach, both regard the human brain as one of the greatest challenges of 21st century science and the organ that makes us “human”. However, it is mainly the necessity of developing new therapies that affect up to a billion people worldwide, which has propelled the search for extensive expertise and investment in neuroscience research. The debate on ethical and social policy issues as well as the research and medical strategies of such gigantic efforts has involved participants as diverse as neuroscientists, philosophers, scholars in ethics and law, politicians, and the general public, rendering modern neuroscience an interdisciplinary and conflictual endeavor. In fact, the brain is described as the biological underpinning of our thoughts, emotions, perceptions, free willed actions, and memories, features unique to our humanity. In this review, three neuroscientists and a philosopher from the neuroethics community provide their perspectives for an up-to-date survey of salient neuroethical issues, ie, modulation of free will and neuropharmaceuticals and neurotechnologies that enhance cognitive capacities, as well as an introduction of the reader to the controversial new discipline of neuroethics. Written for nonexperts in the field, it is intended to reflect on and to impart information helpful in understanding the challenges and the perils of modern neuroscience, whose tools are so powerful as to jeopardize what is uniquely “human” through willful mind manipulation. We conclude that, for any future effort to “recreate” the mind and, at the same time, keep what is uniquely ours, it will be necessary to reflect ethically and review carefully man's past best efforts at self-understanding.

  • 110.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    Cancerpatienter i kliniska prövningar.2016In: Onkologi i Sverige, ISSN 1653-1582, no 1, p. 16-25Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Var tredje person i Sverige kommer under sin livstid att drabbas av cancer, vilket innebär att cancer är en folksjukdom. Stora summor pengar läggs ner på cancerforskning. Många säger att det inte alls är en omöjlig uppgift att besegra cancer, medan andra säger att det kommer att bli mycket svårt. Säkert är dock att om forskningen ska gå framåt krävs mycket pengar och hängivna forskare. Men intebara det. En grundförutsättning för att vi ska kunna få fram nya eller bättre cancerbehandlingar är att nya substanser testas på patienter i läkemedelsstudier, så kallade kliniska prövningar. Om inte patienter vill delta i medicinsk forskning kommer inte cancerforskningen att lyckas. Det är därför viktigt att undersöka hur patienter ser på deltagande i läkemedelsforskning. Trots att många cancerpatienter i Sverige deltar i läkemedelsstudier finns det väldigt lite forskning om varför de väljer att delta, om de förstått informationen de fått och hur de upplever sitt deltagande.

  • 111.
    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.
    God vård innebär att sällsynta sjukdomar ges resurser2018In: Dagens MedicinArticle in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Sverige behöver ta ett nationellt ansvar så att människor med sällsynta diagnoser också kan få ta del av forskning och nya läkemedel.

  • 112.
    Godskesen, Tove E.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Centrum för forsknings- och bioetik, Centre for Research Ethics & Bioethics, Uppsala universitet.
    God vård innebär att sällsynta sjukdomar ges resurser.2018In: Dagens Medicin, ISSN 1104-7488Article in journal (Other (popular science, discussion, etc.))
  • 113.
    Godskesen, Tove E.
    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. Ersta Sköndal Bräcke högskola.
    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.
    Selektiv rapportering av kliniska prövningar2019In: Dagens Medicin, no 15/5Article in journal (Other (popular science, discussion, etc.))
  • 114.
    Godskesen, Tove E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Fernow, Josepine
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

  • 115.
    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.))
  • 116.
    Godskesen, Tove
    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.
    Fernow, Josepine
    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.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.

  • 117.
    Godskesen, Tove
    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. Ersta Sköndal University College.
    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.
    "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials2017In: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, no 10, p. 679-682Article in journal (Refereed)
    Abstract [en]

    Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

  • 118.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet, Universitetet i Bergen.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 119.
    Godskesen, Tove
    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. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Petri, Suzanne
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    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.
    Halkoaho, Arja
    Tampere University of Applied Sciences, Finland.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Pirinen, Merja
    University of Eastern Finland, Kuopio, Finland.
    Engelbak Nielsen, Zandra
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    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, 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.

  • 120.
    Gottvall, Maria
    Uppsala universitet, Vårdvetenskap.
    Introduction of School-Based HPV Vaccination in Sweden: Knowledge and Attitudes among Youth, Parents, and Staff2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis is to provide a better understanding of knowledge, attitudes, consent, and decision-making regarding Human papillomavirus (HPV) vaccination, seen from the perspectives of concerned parties – high school students, school nurses, and parents.

    Two quantitative studies were performed: one descriptive cross-sectional study and one quasi-experimental intervention study. Qualitative studies using focus group interviews and individual interviews were also performed.

    High school students’ knowledge about HPV and HPV prevention was low but their attitudes toward HPV vaccination were positive. An educational intervention significantly increased the students’ knowledge regarding HPV and HPV prevention. Their already positive attitudes toward condom use and HPV vaccination remained unchanged. The students wanted to receive more information about HPV from school nurses. The school nurses were also positive to HPV vaccination but identified many challenges concerning e.g. priorities, obtaining informed consent, culture, and gender. They saw an ethical dilemma in conflicting values such as the child’s right to self-determination, the parents’ right to make autonomous choices on behalf of their children, and the nurse’s obligation to promote health. They were also unsure of how, what, and to whom information about HPV should be given. Parents, who had consented to vaccination of their young daughters, reasoned as follows: A vaccine recommended by the authorities is likely to be safe and effective, and the parents were willing to do what they could to decrease the risk of a serious disease for their daughter. Fear of unknown adverse events was overweighed by the benefits of vaccination. Parents also saw the school nurse as an important source of HPV information.

    Conclusions: Positive attitudes toward HPV vaccination despite limited knowledge about HPV, are overarching themes in this thesis. School nurses have a crucial role to inform about HPV prevention. It is important that the concerned parties are adequately informed about HPV and its preventive methods, so that they can make an informed decision about vaccination. A short school-based intervention can increase knowledge about HPV among students. From a public health perspective, high vaccination coverage is important as it can lead to a reduced number of HPV-related disease cases. 

  • 121.
    Gottvall, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Introduction of School-Based HPV Vaccination in Sweden: Knowledge and Attitudes among Youth, Parents, and Staff2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis is to provide a better understanding of knowledge, attitudes, consent, and decision-making regarding Human papillomavirus (HPV) vaccination, seen from the perspectives of concerned parties – high school students, school nurses, and parents.

    Two quantitative studies were performed: one descriptive cross-sectional study and one quasi-experimental intervention study. Qualitative studies using focus group interviews and individual interviews were also performed.

    High school students’ knowledge about HPV and HPV prevention was low but their attitudes toward HPV vaccination were positive. An educational intervention significantly increased the students’ knowledge regarding HPV and HPV prevention. Their already positive attitudes toward condom use and HPV vaccination remained unchanged. The students wanted to receive more information about HPV from school nurses. The school nurses were also positive to HPV vaccination but identified many challenges concerning e.g. priorities, obtaining informed consent, culture, and gender. They saw an ethical dilemma in conflicting values such as the child’s right to self-determination, the parents’ right to make autonomous choices on behalf of their children, and the nurse’s obligation to promote health. They were also unsure of how, what, and to whom information about HPV should be given. Parents, who had consented to vaccination of their young daughters, reasoned as follows: A vaccine recommended by the authorities is likely to be safe and effective, and the parents were willing to do what they could to decrease the risk of a serious disease for their daughter. Fear of unknown adverse events was overweighed by the benefits of vaccination. Parents also saw the school nurse as an important source of HPV information.

    Conclusions: Positive attitudes toward HPV vaccination despite limited knowledge about HPV, are overarching themes in this thesis. School nurses have a crucial role to inform about HPV prevention. It is important that the concerned parties are adequately informed about HPV and its preventive methods, so that they can make an informed decision about vaccination. A short school-based intervention can increase knowledge about HPV among students. From a public health perspective, high vaccination coverage is important as it can lead to a reduced number of HPV-related disease cases. 

  • 122.
    Gottvall, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Tydén, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Stenhammar, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Informed Consent for HPV Vaccination: A Relational Approach2015In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 23, no 1, p. 50-62Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent's choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced.

  • 123.
    Grady, Christine
    et al.
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Eckstein, Lisa
    Univ Tasmania, Fac Law, Hobart, Tas 7001, Australia..
    Berkman, Ben
    NHGRI, Bethesda, MD USA..
    Brock, Dan
    Harvard Univ, Sch Med, Dept Social Med, Div Med Eth, Cambridge, MA 02138 USA..
    Cook-Deegan, Robert
    Duke Inst Genome Sci & Policy, Durham, NC USA..
    Fullerton, Stephanie M.
    Univ Washington, Sch Med, Genome Eth Law & Policy, Seattle, WA 98195 USA..
    Greely, Hank
    Stanford Law Sch, Crown Quadrangle, Stanford, CA USA..
    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.
    Hull, Sara
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA.;NHGRI, Bioeth Core, Bethesda, MD USA..
    Kim, Scott
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Lo, Bernie
    Greenwall Fdn, New York, NY USA..
    Pentz, Rebecca
    Emory Univ, Ctr Eth, Winship Canc Inst, Atlanta, GA 30322 USA..
    Rodriguez, Laura
    NHGRI, Div Policy Commun & Educ, Bethesda, MD USA..
    Weil, Carol
    NCI, Canc Diag Program, Bethesda, MD 20892 USA..
    Wilfond, Benjamin S.
    Seattle Childrens Hosp, Seattle, WA USA..
    Wendler, David
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Broad Consent for Research With Biological Samples: Workshop Conclusions2015In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 15, no 9, p. 34-42Article in journal (Refereed)
    Abstract [en]

    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.

  • 124.
    Grankvist, Hannah
    et al.
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Kimmelman, Jonathan
    Studies for Translation, Research Ethics, and Medicine (STREAM), Biomedical Ethics Unit/Social Studies of Medicine, McGill University.
    How do researchers decide early clinical trials?2016In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 19, no 2, p. 191-198Article in journal (Refereed)
    Abstract [en]

    Launch of clinical investigation represents a substantial escalation in commitment to a particular clinical translation trajectory; it also exposes human subjects to poorly understood interventions. Despite these high stakes, there is little to guide decision-makers on the scientific and ethical evaluation of early phase trials. In this article, we review policies and consensus statements on human protections, drug regulation, and research design surrounding trial launch, and conclude that decision-making is largely left to the discretion of research teams and sponsors. We then review what is currently understood about how research teams exercise this discretion, and close by laying out a research agenda for characterizing the way investigators, sponsors, and reviewers approach decision-making in early phase research.

  • 125.
    Gustavsson, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Patients with multiple needs for healthcare and priority to the worse off2019In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 33, no 2, p. 261-266Article in journal (Refereed)
    Abstract [en]

    There is a growing body of literature which suggests that decisions about healthcare priority setting should take into account the extent to which patients are worse off. However, such decisions are often based on how badly off patients are with respect to the condition targeted by the treatment whose priority is under consideration (condition-specific severity). In this paper I argue that giving priority to the worse off in terms of condition-specific severity does not reflect the morally relevant sense of being worse off. I conclude that an account of giving priority to the worse off relevant for healthcare priority setting should take into account how badly off patients are when all of their conditions are considered (holistic severity).

  • 126.
    Gustavsson, Erik
    et al.
    Linköping University, Department of Culture and Communication, Arts and Humanities. Linköping University, Faculty of Arts and Sciences.
    Juth, Niklas
    Centre for healthcare ethics, Karolinska institutet, Solna, Sverige.
    Munthe, Christian
    Institutionen för filosofi, lingvistik och vetenskapsteori, Göteborgs universitet, Sverige.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Institutionen för vårdvetenskap, Högskolan i Borås, Sverige.
    Etiska och praktiska utmaningar med ökat patientinflytande2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DD3XArticle in journal (Other academic)
    Abstract [sv]

    Det finns ett ökat intresse för patientinflytande i vården. Ett sådant fokus kan dock komma i konflikt med ett antal värden/praktiker inom vården. I denna artikel identifierar vi att följande värden/praktiker kan påverkas: 

    Idén om patientens vårdbehov förefaller tappa sin moraliska och politiska ställning. 

    Prioriteringar på gruppnivå kan bli svårare att tillämpa på individnivå. 

    Det kan bli svårare att bedöma nyttan med behandlingar. 

    Det kan bli svårare att få fram evidens för behandlingar. 

    Det tycks komplicera idén om den följsamme patienten. 

    Det kan innebära vissa implikationer för resursanvändning. 

    Det kan ge ett nytt perspektiv på idén om att prioritera efter en ansvarsprincip.

  • 127.
    Hansson, Anders
    et al.
    Research Unit and Section for General Practice, FoUU-centrum i Fyrbodal, Vänersborg, Sweden.
    Brodersen, John
    Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
    Reventlow, Susanne
    Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
    Pettersson, Monica
    Department of Vascular Surgery, Sahlgrenska University Hospital, Gothenburg, sweden; Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Opening Pandora's box: The experiences of having an asymptomatic aortic aneurysm under surveillance2012In: Health, Risk and Society, ISSN 1369-8575, E-ISSN 1469-8331, Vol. 14, no 4, p. 341-359Article in journal (Refereed)
    Abstract [en]

    Abdominal aortic aneurysm (AAA) is a ballooning-out of the aorta that does not normally give any symptoms. Undetected and untreated an aortic aneurysm can rupture, which in most cases is fatal. Mass screening of 65-year old men for the early detection of AAA and, in selected cases, operation seem to reduce mortality due to rupture, although, screening has not reduced the overall mortality in this group. In Västra Götaland, the southwest part of Sweden, screening for AAA amongst 65-year old men started in 2009. There are controversies within the medical community about the benefits and adverse effects of screening. In order to explore men's experiences of being screened and knowing they had an aortic aneurysm, we undertook a qualitative interview study with 15 men who in the screening programme were identified as having an aortic aneurysm and who were to be followed-up with annual ultrasonic examinations for an indeterminate number of years. The interviews were analysed for categories and themes using content analysis. The study found that the men were ambivalent about the knowledge that they had an AAA and about the follow-up monitoring. They appreciated having the knowledge but it was accompanied by worry, feelings of anxiety and existential thoughts about the fragility and finiteness of life. We recommend that before a screening programme is implemented, the psycho-social consequences should be thoroughly investigated. Participants should be given adequate and understandable information about the consequences of screening so that they can make an informed choice whether to participate or not.

  • 128.
    Hansson, Matilda
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bruce, William
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Staying Alive: Sjuksköterskans chans till reflektion efter att aktivt deltagit vid ett hjärtstopp2018Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [sv]

    Bakgrund: Att vara närvarande vid ett hjärtstopp kan vara psykiskt påfrestande för vilken

    sjuksköterska som helst. Genom att kontinuerligt få träning och uppdatera sin kunskap

    gällande HLR ger det sjuksköterskan möjlighet att vid senare tillfälle reflektera över

    händelsen och därmed kunna släppa situationen.

    Syfte: Var att belysa allmänsjuksköterskans chans till reflektion efter att aktivt deltagit vid ett

    hjärtstopp.

    Metod: Var en kvalitativ intervjustudie med semistrukturerade intervjufrågor. Fem stycken

    sjuksköterskor intervjuades under november 2017. Intervjuerna transkriberades och efter en

    manifest analysmetod delades innehållet upp i fyra kategorier med två underliggande

    kategorier tillhörande varje kategori.

    Resultat: Det visade att chansen till reflektion var bristande. Vissa informanter upplevde att

    de fick chans till reflektion, medan andra ansåg att det var en brist. Resultatet visade även

    skillnaden på hur snabbt reflektionen skedde efter ett hjärtstopp mellan avdelningar.

    Informanterna uttryckte även detta som en brist, då de ibland inte fick utlopp för sina egna

    känslor och tankar.

    Slutsats: Efter avslutad studie syns bristen vara för stor då alla borde få samma chans till

    reflektion efter avslutad HLR.

  • 129.
    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.
    Genomics for policy makers and for researchers. Review of: Genomics and society-Ethical, Legal, Cultural and Socioeconomic Implication. Edited by: Dhavendra Kumar and Ruth Chadwick. 2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 12, p. 1835-1835Article, book review (Other academic)
  • 130.
    Hansson, Mats G.
    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. ..
    Bouder, Frederic
    Dept Technol & Soc Studies, Maastricht.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Genetics and risk - an exploration of conceptual approaches to genetic risk2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal (Other academic)
  • 131.
    Hansson, Mats G.
    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.
    Lochmuller, Hanns
    Newcastle Univ, Inst Med Genet, John Walton Muscular Dystrophy Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England..
    Riess, Olaf
    Univ Tubingen, Rare Dis Ctr, Inst Med Genet & Appl Genom, Tubingen, Germany..
    Schaefer, Franz
    Heidelberg Univ, Ctr Pediat & Adolescent Med, Div Pediat Nephrol, Heidelberg, Germany..
    Orth, Michael
    Ulm Univ Hosp, Dept Neurol, Ulm, Germany..
    Rubinstein, Yaffa
    NIH, ORDR, Natl Ctr Adv Translat Sci, Bldg 10, Bethesda, MD 20892 USA..
    Molster, Caron
    Dept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia..
    Dawkins, Hugh
    Dept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia.;Murdoch Univ, Ctr Comparat Genom, Murdoch, WA, Australia.;Curtin Univ Technol, Ctr Populat Hlth Res, Bentley, WA, Australia.;Univ Western Australia, Sch Pathol & Lab Med, Nedlands, WA, Australia..
    Taruscio, Domenica
    Ist Super Sanita, Natl Ctr Rare Dis, Rome, Italy..
    Posada, Manuel
    SpainRDR, ISCIII, Inst rare Dis Res, Madrid, Spain.;CIBERER, Madrid, Spain..
    Woods, Simon
    Newcastle Univ, Policy Eth & Life Sci Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England..
    The risk of re-identification versus the need to identify individuals in rare disease research2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 11, p. 1553-1558Article in journal (Refereed)
    Abstract [en]

    There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

  • 132.
    Hansson, Mats G.
    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.
    van Ommen, Gert Jan
    Chadwick, Ruth
    Dillner, Joakim
    Patients would benefit from simplified ethical review and consent procedure2013In: The Lancet Oncology, ISSN 1470-2045, E-ISSN 1474-5488, Vol. 14, no 6, p. 451-453Article in journal (Refereed)
  • 133.
    Hansson, Sven Ove
    Philosophy and History, KTH, School of Architecture and the Built Environment (ABE), Philosophy and History of Technology, Philosophy.
    Scopes, Options, and Horizons - Key Issues in Decision Structuring2018In: Ethical Theory and Moral Practice, ISSN 1386-2820, E-ISSN 1572-8447, Vol. 21, no 2, p. 259-273Article in journal (Refereed)
    Abstract [en]

    Real-life decision-making often begins with a disorderly decision problem that has to be clarified and systematized before a decision can be made. This is the process of decision structuring that has largely been ignored both in decision theory and applied decision analysis. In this contribution, ten major components of decision structuring are identified, namely the determination of its scope (the issues to be covered by the decision), subdivision (if and in that case how the decision will divided into separate parts), agency (who will make the decision), timing, options, control ascriptions, framing, horizon (the consequences and other aspects of outcomes that will be taken into account), criteria (of success) and (provisions for) restructuring. Four of these components, namely the scope, subdivision, options, and horizon of a decision, are subjected to a more detailed analysis.

  • 134.
    Hansson, Sven Ove
    Philosophy and History, KTH, School of Architecture and the Built Environment (ABE), Philosophy and History of Technology, Philosophy.
    The Ethics of Making Patients Responsible2018In: Cambridge Quarterly of Healthcare Ethics, ISSN 0963-1801, E-ISSN 1469-2147, Vol. 27, no 1, p. 87-92Article in journal (Refereed)
    Abstract [en]

    In their daily clinical work, healthcare professionals generally apply what seems to be a double standard for the responsibility of patients. On the one hand, patients are encouraged to take responsibility for lifestyle changes that can improve their chances of good health. On the other hand, when patients fail to follow such recommendations, they are not held responsible for the failure. This seeming inconsistency is explained in terms of the distinction between task responsibility and blame responsibility. The double standard for responsibility is shown to be epistemologically rational, ethically commendable, and therapeutically advantageous. However, this non-blaming approach to patient responsibility is threatened by proposals to assign lower priority in healthcare to patients who are themselves responsible for their disease. Such responsibility-based priority setting requires that physicians assign blame responsibility to their patients, a practice that would run into conflict with the ethical foundations of the patient-physician relationship. Therefore, such proposals should be rejected.

  • 135.
    Harstäde, Carina Werkander
    et al.
    Linnaeus University, Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Växjö, Sweden.
    Blomberg, Karin
    Örebro University, Faculty of Medicine and Health, School of Health Sciences, Örebro, Sweden.
    Benzein, Eva
    Linnaeus University, Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Kalmar, Sweden.
    Östlund, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg. Linnaeus University, Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Växjö, Sweden; Linnaeus University, Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Kalmar, Sweden.
    Dignity-conserving care actions in palliative care: an integrative review of Swedish research.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 8-23Article, review/survey (Refereed)
    Abstract [en]

    Background: Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self‐image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons’ dignity is a crucial challenge for professional nurses. The ‘Dignity Care Intervention’ addresses the multidimensionality of dignity by identifying patients’ dignity‐related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity.

    Methods: An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms ‘dignity’ and ‘palliative care’. Result sections of articles and theses were reviewed for dignity‐conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity.

    Results: Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision‐making. Additionally, nurses’ perceptiveness towards the patients was a core approach.

    Conclusion: The review offers culturally relevant suggestions on how to address specific dignity‐related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person‐centred palliative care that will conserve patients’ dignity.

  • 136.
    Hedegaard, Joel
    Jönköping University, School of Education and Communication, HLK, Lifelong learning/Encell.
    Communication about patients during ward rounds and verbal handovers: A gender perspective2019In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567Article in journal (Refereed)
    Abstract [en]

    This article investigates gender patterns on how two interprofessional teams communicate about patients in their absence. Thirteen ward rounds and 17 verbal handovers were audio-recorded and analyzed through a qualitative content analysis. The ward rounds consisted of 1 physician and 2–4 nurses. The verbal handovers consisted of 2–3 nurses and as many assistant nurses. The data were collected at a cardiac clinic at a hospital in southern Sweden. The results indicate that when patients acted according to socially-accepted gender norms, the communication among the interprofessional teams was characterized as ‘professional’, including communication primarily about the medical situation of the patient and statements of a non-judgmental nature. When patients did not act according to socially-accepted gender norms, the communication among the interprofessional teams switched to become more ‘informal’, including non-medical oriented statements of a negative nature. When the healthcare workers take the patient’s psycho-social condition into account, as advocated by concepts like ‘holistic care’ and ‘patient-centered care’, the risk for speculation and arbitrariness may increase, especially within interprofessional teams who hold a nursing responsibility for patients. Establishing more defined guidelines of how non-medical aspects should be dealt with are thus of importance to the development of an equitable provision and delivery of healthcare.

  • 137.
    Heidenreich, Kaja
    et al.
    Örebro University.
    Bremer, Anders
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Linnaeus University.
    Materstvedt, Lars Johan
    Norwegian University of Science and Technology.
    Tidefelt, Ulf
    Norwegian University of Science and Technology.
    Svantesson, Mia
    University of Glasgow.
    Relational autonomy in the care of the vulnerable: Health care professionals' reasoning in Moral Case Deliberation (MCD)2017In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633Article in journal (Refereed)
    Abstract [en]

    In Moral Case Deliberation (MCD), healthcare professionals discuss ethically di cult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical re ection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justi cations for in uencing the patient, the incapacitated patient’s nebulous interests, and coping with the con ict between using coercion to achieve good while pro- tecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals re ected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, de ning their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ in uence and at the same time take responsibility for their needs as vulnerable humans. 

  • 138.
    Heidenreich, Kaja
    et al.
    Faculty of Health and Medicine, University Health Care Research Center, Örebro University.
    Bremer, Anders
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Materstvedt, Lars Johan
    Department of Philosophy and Religious Studies, Faculty of Humanities, Norwegian University of Science and Technology (NTNU).
    Tidefelt, Ulf
    Faculty of Health and Medicine, University Health Care Research Center, Örebro University.
    Svantesson, Mia
    Faculty of Health and Medicine, University Health Care Research Center, Örebro University.
    Relational autonomy in the care of the vulnerable: Health care professionals' reasoning in Moral Case Deliberation (MCD)2017In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 35, p. 37-42Article in journal (Refereed)
    Abstract [en]

    In Moral Case Deliberation (MCD), healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while pro- tecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans.

  • 139.
    Heidenreich, Kaja
    et al.
    Örebro University, School of Medical Sciences. University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Bremer, Anders
    Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden; PreHospen - Centre for Prehospital Research, University of Borås, Borås, Sweden.
    Materstvedt, Lars Johan
    Department of Philosophy and Religious Studies, Faculty of Humanities, Norwegian University of Science and Technology (NTNU), Trondheim, Norway; Glasgow End of Life Studies Group, School of Interdisciplinary Studies, University of Glasgow, Dumfries, UK.
    Tidefelt, Ulf
    University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Svantesson, Mia
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center, Region Örebro County, Örebro, Sweden.
    Relational autonomy in the care of the vulnerable: health care professionals' reasoning in Moral Case Deliberation (MCD)2018In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, no 4, p. 467-477Article in journal (Refereed)
    Abstract [en]

    In Moral Case Deliberation (MCD), healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals' moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient's nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient's autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients' influence and at the same time take responsibility for their needs as vulnerable humans.

  • 140.
    Heidenreich, Kaja
    et al.
    Örebro University, Sweden.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. University of Borås, Sweden.
    Materstvedt, Lars Johan
    Norwegian University of Science and Technology, Norway;University of Glasgow, UK.
    Tidefelt, Ulf
    Örebro University, Sweden.
    Svantesson, Mia
    Örebro University, Sweden.
    Relational autonomy in the care of the vulnerable: health care professionals' reasoning in Moral Case Deliberation (MCD)2018In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, no 4, p. 467-477Article in journal (Refereed)
    Abstract [en]

    In Moral Case Deliberation (MCD), healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans.

  • 141. Heidenreich, Kaja
    et al.
    Slowther, Anne
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Griffiths, Frances
    Svantesson-Sandberg, Mia
    The complex decision-making process of referring patients to intensive care – meanings of senior doctor’s experiences2019Conference paper (Refereed)
    Abstract [en]

    Background: The decision whether to initiate intensive care for the critically ill patient involves ethical questions regarding what is good and right for the patient. It is not clear how referring doctors negotiate these ethical questions in practice.

    Objectives: To illuminate the meaning of senior referring doctors´ lived experiences of decision-making about whether to initiate intensive care treatment. 

    Methods: Analysis, using a phenomenological hermeneutical method, of interviews with 27 senior doctors from departments regularly referring patients to intensive care in six British hospitals. The interviews were conducted as part of the larger research project ‘Understanding and improving the decision-making process surrounding admission to the intensive care unit’, funded by the National Institute of Health Research, UK.

    Results: Senior doctors struggle with the complex decision-making process when they are in doubt whether escalation to intensive care for the critically ill patient would be beneficial. A trusted process requires senior, mutual responsiveness between the referring doctor and the intensivist. Within the professional vulnerability created by the burdensome uncertainty of not being sure what is good and right for the patient, moral responsibility is secured through clinical proximity, and confidence is gained through responsive interaction.

    Conclusions: Decision-making requires a reliable process based on mutual responsiveness and proximity. To promote this, an organizational structure and culture is needed where mutual recognition and support between decision-makers are valued.

  • 142.
    Helgesson, Gert
    et al.
    Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm Ctr Healthcare Eth CHE, Stockholm, Sweden..
    Bertilsson, Goran
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Domeij, Helena
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Fahlstrom, Gunilla
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Heintz, Emelie
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden.;Karolinska Inst, Med Management Ctr, Dept Learning Informat Management & Eth, Stockholm, Sweden..
    Hjern, Anders
    Karolinska Inst, Dept Med, Clin Epidemiol, Stockholm, Sweden.;Ctr Hlth Equ Studies, Stockholm, Sweden..
    Nehlin Gordh, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Nordin, Viviann
    Karolinska Inst KIND, Ctr Neurodev Disorders, Stockholm, Sweden..
    Rangmar, Jenny
    Univ Gothenburg, Dept Psychol, Gothenburg, Sweden..
    Rydell, Ann-Margret
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Sundelin Wahlsten, Viveka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Child and Adolescent Psychiatry.
    Hultcrantz, Monica
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden.;Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden..
    Ethical aspects of diagnosis and interventions for children with fetal alcohol Spectrum disorder (FASD) and their families2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 1Article in journal (Refereed)
    Abstract [en]

    Background:

    Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD.

    Methods:

    Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions with experts in the field, published literature, and medical ethicists.

    Results:

    Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the socia ! services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition.

    Conclusions:

    The value for the concerned individuals of obtaining a FASD-related description of their condition - for instance, in terms of wellbeing - is not established. Nor is it established that allocating resources based, on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs.

  • 143.
    Helgesson, Gert
    et al.
    Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm Ctr Healthcare Eth CHE, Stockholm, Sweden..
    Bertilsson, Göran
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Domeij, Helena
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Fahlström, Gunilla
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden..
    Heintz, Emelie
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden.;Karolinska Inst, Med Management Ctr, Dept Learning Informat Management & Eth, Stockholm, Sweden..
    Hjern, Anders
    Karolinska Inst, Dept Med, Clin Epidemiol, Stockholm, Sweden.;Ctr Hlth Equ Studies, Stockholm, Sweden..
    Nehlin, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Nordin, Viviann
    Karolinska Inst KIND, Ctr Neurodev Disorders, Stockholm, Sweden..
    Rangmar, Jenny
    Univ Gothenburg, Dept Psychol, Gothenburg, Sweden..
    Rydell, Ann-Margret
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Sundelin Wahlsten, Viveka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Child and Adolescent Psychiatry.
    Hultcrantz, Monica
    Swedish Agcy Hlth Technol Assessment Assessment So, Stockholm, Sweden.;Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden..
    Ethical aspects of diagnosis and interventions for children with fetal alcohol Spectrum disorder (FASD) and their families2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 1Article in journal (Refereed)
    Abstract [en]

    Background: Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD.

    Methods: Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions with experts in the field, published literature, and medical ethicists.

    Results: Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the socia ! services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. Conclusions: The value for the concerned individuals of obtaining a FASD-related description of their condition - for instance, in terms of wellbeing - is not established. Nor is it established that allocating resources based, on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs.

  • 144. Helgesson, Gert
    et al.
    Bülow, William
    Stockholm University, Faculty of Humanities, Department of Philosophy.
    Eriksson, Stefan
    Godskesen, Tove E.
    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.

  • 145.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Stockholm, Sweden.
    Nolan, Mike
    University of Sheffield, UK .
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Ethical and methodological issues in interviewing persons with dementia2007In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, p. 608-619Article in journal (Refereed)
    Abstract [en]

    People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

  • 146.
    Henneman, Lidewij
    et al.
    Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Borry, Pascal
    Univ Leuven, Ctr Biomed Eth & Law, Leuven, Belgium..
    Chokoshvili, Davit
    Univ Leuven, Ctr Biomed Eth & Law, Leuven, Belgium.;Univ Hosp Ghent, Ctr Med Genet Ghent, Ghent, Belgium..
    Cornel, Martina C.
    Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    van El, Carla G.
    Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam, Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Forzano, Francesca
    Osped Galliera, Med Genet Unit, Genoa, Italy..
    Hall, Alison
    PHG Fdn, Cambridge, England..
    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.
    Janssens, Sandra
    Univ Hosp Ghent, Ctr Med Genet Ghent, Ghent, Belgium..
    Kayserili, Hulya
    Koc Univ, Sch Med, Dept Med Genet, Istanbul, Turkey..
    Lakeman, Phillis
    Univ Amsterdam, Acad Med Ctr, Dept Clin Genet, Meibergdreef 9, NL-1105 AZ Amsterdam, Netherlands..
    Lucassen, Anneke
    Univ Southampton, Dept Clin Eth & Law CELS, Southampton, Hants, England.;Wessex Clin Genet Serv, Southampton, Hants, England..
    Metcalfe, Sylvia A.
    Univ Melbourne, Murdoch Childrens Res Inst, Parkville, Vic 3052, Australia.;Univ Melbourne, Dept Paediat, Parkville, Vic 3052, Australia..
    Vidmar, Lovro
    Univ Ljubljana, Med Ctr, Clin Inst Med Genet, Ljubljana 1000, Slovenia..
    de Wert, Guido
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, NL-6200 MD Maastricht, Netherlands..
    Dondorp, Wybo J.
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, NL-6200 MD Maastricht, Netherlands..
    Peterlin, Borut
    Univ Ljubljana, Med Ctr, Clin Inst Med Genet, Ljubljana 1000, Slovenia..
    Responsible implementation of expanded carrier screening2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 6, p. E1-E12Article in journal (Refereed)
    Abstract [en]

    This document of the European Society of Human Genetics contains recommendations regarding responsible implementation of expanded carrier screening. Carrier screening is defined here as the detection of carrier status of recessive diseases in couples or persons who do not have an a priori increased risk of being a carrier based on their or their partners' personal or family history. Expanded carrier screening offers carrier screening for multiple autosomal and X-linked recessive disorders, facilitated by new genetic testing technologies, and allows testing of individuals regardless of ancestry or geographic origin. Carrier screening aims to identify couples who have an increased risk of having an affected child in order to facilitate informed reproductive decision making. In previous decades, carrier screening was typically performed for one or few relatively common recessive disorders associated with significant morbidity, reduced life-expectancy and often because of a considerable higher carrier frequency in a specific population for certain diseases. New genetic testing technologies enable the expansion of screening to multiple conditions, genes or sequence variants. Expanded carrier screening panels that have been introduced to date have been advertised and offered to health care professionals and the public on a commercial basis. This document discusses the challenges that expanded carrier screening might pose in the context of the lessons learnt from decades of population-based carrier screening and in the context of existing screening criteria. It aims to contribute to the public and professional discussion and to arrive at better clinical and laboratory practice guidelines.

  • 147. Hens, Kristien
    et al.
    Cutas, DanielaUmeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosopy, Linguistics and Theory of Science University of Gothenburg Gothenburg, Sweden.Horstkötter, Dorothee
    Parental responsibility in the context of neuroscience and genetics2017Collection (editor) (Refereed)
    Abstract [en]

    Should parents aim to make their children as normal as possible to increase their chances to "fit in"? Are neurological and mental health conditions a part of children's identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life?

    This volume explores all of these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children's wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis.

  • 148.
    Holm, Marie-Louise
    Linköping University, Department of Thematic Studies, The Department of Gender Studies. Linköping University, Faculty of Arts and Sciences.
    Fleshing out the self: Reimagining intersexed and trans embodied lives through (auto)biographical accounts of the past2017Doctoral thesis, monograph (Other academic)
    Abstract [en]

    This thesis explores how current ways of imagining possibilities for intersexed and trans embodied lives within medical contexts might be informed by and reimagined through the historical lived experiences of intersexed and trans individuals as they have been articulated in autobiographical accounts.

    Postmodern, queer, intersex, and trans researchers and activists have criticised existing standards of intersex and trans healthcare for limiting the possibilities for diverse embodied lives by articulating certain forms of embodiment and selfhood as more likely to enable a liveable life than others. This has often been done in a medico-legal context by referring to experiences in the past of the unliveability of corporealities and gendersexed situations that differ from privileged positions. With a point of departure in these critiques, this thesis reopens questions about how intersexed and trans people may be embodied and have relations with others by reflecting upon the period of the first three-quarters of the 20th century, when the present standards of care and diagnostic categories were emerging, but had not yet become established.

    Drawing upon a unique set of historical source material from the archives of the Danish Ministry of Justice and the Medico-Legal Council, intersexed and trans persons’ life stories are rearticulated from their own and medico-legal experts’ accounts written in relation to applications for change of legal gendersex status and medical transition. In this way, the process is traced through which these life stories have been repeatedly rearticulated in order to become a usable basis for diagnosis and decision-making. At the same time, the stories are unfolded once more in a rearticulation focusing on their complexity and diversity.

  • 149.
    Howard, Heidi C
    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.
    Knoppers, Bartha Maria
    Borry, Pascal
    Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects.2010In: EMBO Reports, ISSN 1469-221X, E-ISSN 1469-3178, Vol. 11, no 8, p. 579-82Article in journal (Refereed)
  • 150.
    Howard, Heidi Carmen
    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.
    Iwarsson, Erik
    Karolinska Inst, Karolinska Univ Hosp, Dept Mol Med & Surg, CMM L8 02, Stockholm, Sweden.;Karolinska Inst, Karolinska Univ Hosp, Ctr Mol Med, CMM L8 02, Stockholm, Sweden..
    Mapping uncertainty in genomics2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 117-128Article in journal (Refereed)
    Abstract [en]

    The relatively novel and dynamic science of genomics holds many unknowns for stakeholders, and in particular for researchers and clinicians, as well as for participants and patients. At a time when many authors predict a future in which genomic medicine will be the norm, it is particularly relevant to discuss the unknowns surrounding genetics and genomics, including the notions of risk and uncertainty. This article will present a discussion regarding the uncertainty pertaining specifically to high throughput sequencing approaches, including the topic of incidental findings. This discussion will be guided by a taxonomy of uncertainty conceptualised around three areas of uncertainty: the source of uncertainty, the issues of uncertainty and the loci of uncertainty. This taxonomy can be used as a tool by all stakeholders involved in genomics to help further understand and anticipate uncertainties in genomics. Furthermore, to better contextualize this information, and also because this contribution is born out of an international project titled Mind the Risk', which addresses risk information in genetics and genomics from many different disciplinary perspectives, another aim of this article is to briefly present the basic issues pertaining to the unknowns, risks, and uncertainties of genetics as well as genomics for an audience of non-geneticists. Ultimately, the mapping out of uncertainty in genomics should allow for a better characterization of the uncertainty and consequently for a better management and communication of these uncertainties to end-users (research participants and patients).

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