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  • 51.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands .
    Dondorp, Wybo
    Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands .
    Swierstra, Tsjalling
    Department of Philosophy, Maastricht University, Maastricht, The Netherlands .
    Repping, Sjoerd
    Centre for Reproductive Medicine, University of Amsterdam, Amsterdam, The Netherlands.
    de Wert, Guido
    Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands.
    Artificial gametes: perspectives of geneticists, ethicists and representatives of potential users2014In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 7, no 3, p. 339-345Article in journal (Refereed)
    Abstract [en]

    Several threads of research towards developing artificial gametes are ongoing in a number of research labs worldwide. The development of a technology that could generate gametes in vitro has significant potential for human reproduction, and raises a lot of interest, as evidenced by the frequent and extensive media coverage of research in this area. We have asked researchers involved in work with artificial gametes, ethicists, and representatives of potential user groups, how they envisioned the use of artificial gametes in human reproduction. In the course of three focus groups, the participants commented on the various aspects involved. The two recurring themes were the strength of the claim of becoming a parent genetically, and the importance of responsible communication of science. The participants concurred that (a) the desire or need to have genetic offspring of one’s own does not warrant the investment of research resources into these technologies, and that (b) given the minefield in terms of moral controversy and sensitivity that characterises the issues involved, how information is communicated and handled is of great importance.

  • 52.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden.
    Hens, Kristien
    Department of Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.
    Preserving children's fertility: two tales about children's right to an open future and the margins of parental obligations2015In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 18, no 2, p. 253-260Article in journal (Refereed)
    Abstract [en]

    The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic.

  • 53.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Munthe, Christian
    University of Gothenburg, Department of Philosophy, Linguistics and Theory of Science.
    Legal imperialism in the regulation of stem cell research and therapy: the problem of extraterritorial jurisdiction2010In: Contested Cells: Global Perspectives on the Stem Cell Debates / [ed] B. Capps and A. Campbell, Singapore and London: World Scientific and Imperial College Press , 2010Chapter in book (Refereed)
  • 54.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosophy, Linguistics and Theory of Science, Göteborgs Universitet, Göteborg, Sweden.
    Shaw, David
    Basel, Switzerland; Maastricht University, Maastricht, The Netherlands.
    Writers blocked: on the wrongs of research co-authorship and some possible strategies for improvement2015In: Science and Engineering Ethics, ISSN 1353-3452, E-ISSN 1471-5546, Vol. 21, no 5, p. 1315-1329Article in journal (Refereed)
    Abstract [en]

    The various problems associated with co-authorship of research articles have attracted much attention in recent years. We believe that this (hopefully) growing awareness is a very welcome development. However, we will argue that the particular and increasing importance of authorship and the harmful implications of current practices of research authorship for junior researchers have not been emphasised enough. We will use the case of our own research area (bioethics) to illustrate some of the pitfalls of current publishing practices – in particular, the impact on the evaluation of one’s work in the area of employment or funding. Even where there are explicit guidelines, they are often disregarded. This disregard, which is often exemplified through the inflation of co-authorship in some research areas, may seem benign to some of us; but it is not. Attribution of co-authorship for reasons other than merit in relation to the publication misrepresents the work towards that publication, and generates unfair competition. We make a case for increasing awareness, for transparency and for more explicit guidelines and regulation of research co-authorship within and across research areas. We examine some of the most sensitive areas of concern and their implications for researchers, particularly junior ones, and we suggest several strategies for future action.

  • 55.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden .
    Smajdor, Anna
    Norwich School of Medicine, University of East Anglia, Norwich, UK .
    "I am your mother and your father!": in vitro derived gametes and the ethics of solo reproduction2017In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 25, no 4, p. 354-369Article in journal (Refereed)
    Abstract [en]

    In this paper, we will discuss the prospect of human reproduction achieved with gametes originating from only one person. According to statements by a minority of scientists working on the generation of gametes in vitro, it may become possible to create eggs from men’s non-reproductive cells and sperm from women’s. This would enable, at least in principle, the creation of an embryo from cells obtained from only one individual: ‘solo reproduction’. We will consider what might motivate people to reproduce in this way, and the implications that solo reproduction might have for ethics and policy. We suggest that such an innovation is unlikely to revolutionise reproduction and parenting. Indeed, in some respects it is less revolutionary than in vitro fertilisation as a whole. Furthermore, we show that solo reproduction with in vitro created gametes is not necessarily any more ethically problematic than gamete donation - and probably less so. Where appropriate, we draw parallels with the debate surrounding reproductive cloning. We note that solo reproduction may serve to perpetuate reductive geneticised accounts of reproduction, and that this may indeed be ethically questionable. However, in this it is not unique among other technologies of assisted reproduction, many of which focus on genetic transmission. It is for this reason that a ban on solo reproduction might be inconsistent with continuing to permit other kinds of reproduction that also bear the potential to strengthen attachment to a geneticised account of reproduction. Our claim is that there are at least as good reasons to pursue research towards enabling solo reproduction, and eventually to introduce solo reproduction as an option for fertility treatment, as there are to do so for other infertility related purposes.

  • 56.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Smajdor, Anna
    Postmenopausal Motherhood Reloaded: Advanced Age and In Vitro Derived Gametes2015In: Hypatia, ISSN 0887-5367, E-ISSN 1527-2001, Vol. 30, no 2, p. 386-402Article in journal (Refereed)
    Abstract [en]

    In this paper we look at the implications of a prospective emerging technology for the case in favor of, or against, postmenopausal motherhood. Technologies such as in vitro derived gametes (sperm and eggs derived from non-reproductive cells) have the potential to influence the ways in which reproductive medicine is practiced, and will bring new dimensions to debates in this area. We explain what in vitro derived gametes are and how their development may impact on the case of postmenopausal motherhood. We briefly review some of the concerns that postmenopausal motherhood has raised – and the implications that the successful development, and use in reproduction, of artificial gametes might have for such concerns. The concerns addressed include arguments from nature, risks and efficacy, reduced energy of the mother, and maternal life expectancy. We also consider whether the use of in vitro derived gametes to facilitate postmenopausal motherhood would contribute to reinforcing a narrow geneticized account of reproduction and a pro-reproductive culture that encourages women to produce genetically related offspring at all costs. 

  • 57.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Smajdor, Anna
    Reproductive technologies and the family in the twenty-first century2018In: The freedom of scientific research: Bridging the gap between science and society / [ed] Simona Giordano, Manchester University Press, 2018Chapter in book (Refereed)
  • 58.
    Cutas, Daniela
    et al.
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden.
    Smajdor, Anna
    Hens, Kristien
    Procreative procrastination: the ethics of postponed parenthood2017In: Preventing age related fertility loss / [ed] Dominic Stoop, Springer Publishing Company, 2017, p. 141-156Chapter in book (Refereed)
    Abstract [en]

    In recent years, there has been growing concern over the perceived tendency of women to postpone childbearing. In this chapter, we show that some of the responses to the phenomenon of postponed reproduction are deeply problematic. The question of whether it is accurate to construe later motherhood as postponement at all is far from clear. Moreover, public health messages tend to recommend earlier motherhood as a way of avoiding risks, but this is a crude oversimplification: reproduction involves risks whenever it is undertaken. The focus on risk calls into question some of the strategies intended to remedy postponement of parenthood. There is also the question of where men feature in these decisions: they are all but absent in the public health material and media debates. We consider whether technology could offer a solution to postponement of parenthood, whether there are any benefits to postponement, and finally, whether postponed parenthood could itself be seen as part of a broader trend towards neoteny (the delaying of maturity) in human evolution.

  • 59.
    Dahlquist, Gisela
    Department of Pediatrics, Sachs' Children Hospital, Stockholm.
    Bredda expertkretsen, ta med fler lekmän: Kräv etisk skolning och ge den meritvärde1988In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 85, no 50, p. 4449-4450Article in journal (Refereed)
  • 60.
    Dahlquist, Gisela
    Department of Paediatrics, Sachs' Children's Hospital, Stockholm.
    Epidemiological and ethical consiluations on trials with immunotherapy in pre-type 1 (insulin-dependent) diabetes mellitus1991In: Diabetologia, ISSN 0012-186X, E-ISSN 1432-0428, Vol. 34, no 7, p. 536-Article in journal (Refereed)
  • 61.
    Dahlquist, Gisela
    Department of Pediatrics, Sachs' Children Hospital, Stockholm.
    Medicinsk etik i barnläkarens vardag - kränks patientens integritet utan starka skäl?1989In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 86, no 49, p. 4348-4350Article in journal (Refereed)
  • 62.
    Dahlquist, Gisela
    et al.
    Department of Pediatrics, Sachs' Children Hospital, Stockholm.
    Persson, B
    Wallensten, M
    Vem ska betala diabetesungdomars undervisning i egenvård?1989In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 86, no 45, p. 3884-Article in journal (Other (popular science, discussion, etc.))
  • 63.
    Dahlqvist, Rune
    Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Pharmacology.
    [Knowledge on feet of clay]2008In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 105, no 19, p. 1405-1406Article in journal (Other academic)
  • 64. Daulaire, Nils
    et al.
    Bang, Abhay
    Tomson, Goran
    Kalyango, Joan N.
    Cars, Otto
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Infectious Diseases.
    Universal Access to Effective Antibiotics is Essential for Tackling Antibiotic Resistance2015In: Journal of Law, Medicine & Ethics, ISSN 1073-1105, E-ISSN 1748-720X, Vol. 43, no S3, p. 17-21Article in journal (Refereed)
    Abstract [en]

    Universal access to effective antimicrobials is essential to the realization of the right to health. At present, 5.7 million people die from treatable infections each year because they lack this access. Yet, community-based diagnosis and appropriate treatment for many of the leading causes of avoidable infectious deaths has been shown to be feasible and effective, demonstrating that strategies to reach the under-served need to receive high priority. This is a necessary part of a broad strategy to assure the long-term benefits of antimicrobials and to combat antimicrobial resistance, both because the lack of systematic and rigorous efforts to assure effective coverage increases the likelihood of antimicrobial resistance, and because global efforts aimed at antimicrobial stewardship and innovation cannot succeed without explicitly addressing the needs of the under-served. Elements of this strategy will include clear evidence-based treatment protocols, a robust international framework and locally tailored regulations, active engagement with communities and local health providers, strong attention to program management and cost considerations, a focus on the end user, and robust surveillance and response to emerging resistance patterns. Only by balancing the needs of universal access with stewardship and innovation, and assuring that they are mutually reinforcing can a global strategy hope to effectively address antimicrobial resistance.

  • 65.
    de Snoo-Trimp, Janine
    et al.
    VU University Medical Centre, Department of Medical Humanities and the Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
    Widdershoven, Guy
    VU University Medical Centre, Department of Medical Humanities and the Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
    Svantesson, Mia
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center, Region Örebro County, Örebro, Sweden; Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
    de Vet, Riekie
    Department of Medical Humanities, VU University Medical Centre, Amsterdam, Netherlands; Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
    Molewijk, Bert
    Department of Medical Humanities, VU University Medical Centre, Amsterdam, Netherlands; Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
    What Outcomes do Dutch Healthcare Professionals Perceive as Important Before Participation in Moral Case Deliberation?2017In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 31, no 4, p. 246-257Article in journal (Refereed)
    Abstract [en]

    Background: There has been little attention paid to research on the outcomes of clinical ethics support (CES) or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes.

    Objective: To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation (MCD), prior to MCD participation, and to compare results between respondents.

    Methods: This mixed-methods study used both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions.

    Results: 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were more open communication', better mutual understanding', concrete actions', see the situation from different perspectives', consensus on how to manage the situation' and find more courses of action'. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents.

    Conclusions: Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD.

  • 66. De Wert, G.
    et al.
    Heindryckx, B.
    Pennings, G.
    Clarke, A.
    Eichenlaub-Ritter, U.
    van El, Carla G.
    Forzano, F.
    Goddijn, M.
    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.
    Radojkovic, D.
    Rial-Sebbag, E.
    Dondorp, W.
    Tarlatzis, B. C.
    Cornel, M. C.
    Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 450-470Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, including editing of the germline. The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. This document provides the background to the Recommendations. Germline gene editing is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if germline gene editing would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique could help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? This Background document summarizes the scientific developments and expectations regarding germline gene editing, legal regulations at the European level, and ethics for three different settings (basic research, preclinical research and clinical applications). In ethical terms, we argue that the deontological objections (e.g., gene editing goes against nature) do not seem convincing while consequentialist objections (e.g., safety for the children thus conceived and following generations) require research, not all of which is allowed in the current legal situation in European countries. Development of this Background document and Recommendations reflects the responsibility to help society understand and debate the full range of possible implications of the new technologies, and to contribute to regulations that are adapted to the dynamics of the field while taking account of ethical considerations and societal concerns.

  • 67.
    de Wert, Guido
    et al.
    Department of Health, Ethics and Society, Research Institutes GROW and CAPHRI, Fac. of Health, Medicine and the Life Sciences, Maastricht University, Maastricht, The Netherlands.
    Pennings, Guido
    Bioethics Institute Ghent, Department of Philosophy and Moral Science, Ghent University, Ghent, Belgium.
    Clarke, Angus
    School of Medicine, Cardiff University, Cardiff, UK.
    Eichenlaub-Ritter, Ursula
    Institute of Gene Technology/Microbiology, Faculty of Biology, University of Bielefeld, Bielefeld, Germany.
    van El, Carla G.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Forzano, Francesca
    Clinical Genetics Department, Guy’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London, UK.
    Goddijn, Mariëtte
    Center for Reproductive Medicine, Department of Obstetrics and Gynecology, Academic Medical Center, Amsterdam-Zuidoost, The Netherlands.
    Heindryckx, Björn
    Ghent-Fertility and Stem cell Team (G-FaST), Department for Reproductive Medicine, Ghent University Hospital, Ghent, Belgium.
    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.
    Radojkovic, Dragica
    Laboratory for Molecular Biology, Institute of Molecular Genetics and Genetic Engineering, University of Belgrade, Belgrade, Serbia.
    Rial-Sebbag, Emmanuelle
    University Paul Sabatier Toulouse, Toulouse, France.
    Tarlatzis, Basil C.
    1st Department of Obstetrics & Gynecology, School of Medicine, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Cornel, Martina C.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Human germline gene editing: Recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 445-449Article in journal (Refereed)
    Abstract [en]

    Technological developments in gene editing raise high expectations for clinical applications, first of all for somatic gene editing but in theory also for germline gene editing (GLGE). GLGE is currently not allowed in many countries. This makes clinical applications in these countries impossible now, even if GLGE would become safe and effective. What were the arguments behind this legislation, and are they still convincing? If a technique can help to avoid serious genetic disorders, in a safe and effective way, would this be a reason to reconsider earlier standpoints? The European Society of Human Reproduction and Embryology (ESHRE) and the European Society of Human Genetics (ESHG) together developed a Background document and Recommendations to inform and stimulate ongoing societal debates. After consulting its membership and experts, this final version of the Recommendations was endorsed by the Executive Committee and the Board of the respective Societies in May 2017. Taking account of ethical arguments, we argue that both basic and pre-clinical research regarding GLGE can be justified, with conditions. Furthermore, while clinical GLGE would be totally premature, it might become a responsible intervention in the future, but only after adequate pre-clinical research. Safety of the child and future generations is a major concern. Future discussions must also address priorities among reproductive and potential non-reproductive alternatives, such as PGD and somatic editing, if that would be safe and successful. The prohibition of human germline modification, however, needs renewed discussion among relevant stakeholders, including the general public and legislators.

  • 68.
    Domeij, Helena
    et al.
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Fahlstrom, Gunilla
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Bertilsson, Goran
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden.
    Hultcrantz, Monica
    Swedish Agcy Hlth Technol Assessment & Assessment, Stockholm, Sweden; Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Munthe-Kaas, Heather
    Norwegian Inst Publ Hlth, Ctr Hlth Serv, Oslo, Norway.
    Nehlin Gordh, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital.
    Helgesson, Gert
    Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm, Sweden.
    Experiences of living with fetal alcohol spectrum disorders: a systematic review and synthesis of qualitative data2018In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 60, no 8, p. 741-+Article, review/survey (Refereed)
    Abstract [en]

    Aim: To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families.

    Method: A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis. Methodological limitations and confidence in the evidence were assessed using a modified version of the Critical Appraisal Skills Programme and the Grading of Recommendations, Assessment, Development and Evaluation–Confidence in the Evidence from Reviews of Qualitative Research approach respectively.

    Results: Findings from 18 studies show that individuals with FASD experience a variation of disabilities, ranging from somatic problems, high pain tolerance, destructive behaviour, hyperactivity, and aggressiveness, to social problems with friendship, school attendance, and maintenance of steady employment. Most studies reported parents’ experiences with FASD; parenting was viewed as a lifelong engagement and that the whole family is isolated and burdened because of FASD. People with FASD feel that their difficulties affect their daily life in a limiting way and make them feel different from others.

    Interpretation: From the perspective of primarily parents, individuals with FASD and their parents face many different difficulties, for which they need societal support.

  • 69.
    Dondorp, Wybo
    et al.
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands..
    de Wert, Guido
    Maastricht Univ, Res Sch CAPHRI, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands.;Maastricht Univ, Res Sch GROW, Dept Hlth Eth & Soc, NL-6200 MD Maastricht, Netherlands..
    Bombard, Yvonne
    Univ Toronto, Fac Med, Li Ka Shing Knowledge Inst, St Michaels Hosp, Toronto, ON, Canada.;Univ Toronto, Fac Med, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada..
    Bianchi, Diana W.
    Tufts Univ, Sch Med, Dept Pediat Obstet & Gynecol, Boston, MA 02111 USA..
    Bergmann, Carsten
    Ctr Human Genet Biosci, Ingelheim, Germany.;Univ Freiburg, Med Ctr, Dept Med, D-79106 Freiburg, Germany..
    Borry, Pascal
    Leuven Univ, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Louvain, Belgium..
    Chitty, Lyn S.
    Great Ormond St Hosp & UCLH NHS Fdn Trusts, UCL Inst Child Hlth, Clin & Mol Genet Unit, London, England..
    Fellmann, Florence
    Univ Lausanne Hosp, Serv Med Genet, Lausanne, Switzerland..
    Forzano, Francesca
    Osped Galliera, Med Genet Unit, Genoa, Italy..
    Hall, Alison
    PHG Fdn, Cambridge, England..
    Henneman, Lidewij
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    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.
    Lucassen, Anneke
    Univ Southampton, Dept Clin Eth & Law CELS, Southampton, Hants, England.;Wessex Clin Genet Serv, Southampton, Hants, England..
    Ormond, Kelly
    Stanford Univ, Sch Med, Dept Genet, Stanford, CA USA.;Stanford Univ, Sch Med, Stanford Ctr Biomed Eth, Stanford, CA USA..
    Peterlin, Borut
    Univ Ljubljana, Med Ctr, Clin Inst Med Genet, Ljubljana 61000, Slovenia..
    Radojkovic, Dragica
    Univ Belgrade, IMGGE, Lab Mol Biol, Belgrade, Serbia..
    Rogowski, Wolf
    Helmholtz Zentrum, Deutsch Forschungszentrum Gesundheit & Umwelt, Munich, Germany..
    Soller, Maria
    Lund Univ, Div Clin Genet, Lund, Sweden.;Univ Lund Hosp, Reg Labs Reg Skane, S-22185 Lund, Sweden..
    Tibben, Aad
    Leiden Univ, Med Ctr, Dept Clin Genet, Leiden, Netherlands..
    Tranebjaerg, Lisbeth
    Bispebjerg Hosp, Rigshosp, Dept Audiol, Copenhagen, Denmark.;Univ Copenhagen, Kennedy Ctr, Dept Clin Genet, Copenhagen, Denmark.;Univ Copenhagen, ICMM, Inst Cellular & Mol Med, Copenhagen, Denmark..
    van El, Carla G.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Cornel, Martina C.
    Vrije Univ Amsterdam Med Ctr, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands.;Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam, Netherlands..
    Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening2015In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 23, no 11, p. 1438-1450Article in journal (Refereed)
    Abstract [en]

    This paper contains a joint ESHG/ASHG position document with recommendations regarding responsible innovation in prenatal screening with non-invasive prenatal testing (NIPT). By virtue of its greater accuracy and safety with respect to prenatal screening for common autosomal aneuploidies, NIPT has the potential of helping the practice better achieve its aim of facilitating autonomous reproductive choices, provided that balanced pretest information and non-directive counseling are available as part of the screening offer. Depending on the health-care setting, different scenarios for NIPT-based screening for common autosomal aneuploidies are possible. The trade-offs involved in these scenarios should be assessed in light of the aim of screening, the balance of benefits and burdens for pregnant women and their partners and considerations of cost-effectiveness and justice. With improving screening technologies and decreasing costs of sequencing and analysis, it will become possible in the near future to significantly expand the scope of prenatal screening beyond common autosomal aneuploidies. Commercial providers have already begun expanding their tests to include sex-chromosomal abnormalities and microdeletions. However, multiple false positives may undermine the main achievement of NIPT in the context of prenatal screening: the significant reduction of the invasive testing rate. This document argues for a cautious expansion of the scope of prenatal screening to serious congenital and childhood disorders, only following sound validation studies and a comprehensive evaluation of all relevant aspects. A further core message of this document is that in countries where prenatal screening is offered as a public health programme, governments and public health authorities should adopt an active role to ensure the responsible innovation of prenatal screening on the basis of ethical principles. Crucial elements are the quality of the screening process as a whole (including non-laboratory aspects such as information and counseling), education of professionals, systematic evaluation of all aspects of prenatal screening, development of better evaluation tools in the light of the aim of the practice, accountability to all stakeholders including children born from screened pregnancies and persons living with the conditions targeted in prenatal screening and promotion of equity of access.

  • 70.
    Dreborg, Sten
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Redovisat forskningsfusk bara toppen av isberget?2013In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 110, no 37, p. 1584-1585Article in journal (Other academic)
  • 71.
    Dwyer, Lise-Lotte
    et al.
    Örebro University, Sweden, and Ersta Sköndal University College, Stockholm, Sweden.
    Andershed, Birgitta
    Örebro University, Sweden, and Ersta Sköndal University College, Stockholm, Sweden.
    Nordenfelt, Lennert
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College Stockholm, Sweden and Karolinska Institutet, Stockholm, Sweden.
    Dignity as experienced by nursing home staff2009In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 4, no 3, p. 185-193Article in journal (Refereed)
    Abstract [en]

    Aims and objectives.  To explore nursing home staff members’ experiences of what dignity in end of life care means to older people and to themselves.

    Background.  Dignity is a concept often used in end-of-life care, but its meaning is rarely clarified.

    Design.  Qualitative descriptive study.

    Methods.  Content analysis. This study is based on interviews with 21 staff members in four different nursing homes in Sweden.

    Findings.  The results show that staff members balanced between providing for the older person’s physical needs while wishing to be able to deliver a ‘deeper’ level of care. The older people’s dignity is presented in the main theme: Feeling trust – Showing respect. The staff members’ dignity is presented in the main theme: Maintaining self-respect – Being shown respect. Threats to dignity are presented in the main theme: conflicts between the ideal and the reality.

    Conclusions.  The results reveal that nursing home staff members deal with a moral conflict between what they are able to deliver and what they would like to provide in the care of older people.

    Relevance to clinical practice.  To promote older people’s dignity, there is a need to take account of staff members’ work situation. Supervision and continuous education could be one way of achieving this.

  • 72.
    Dwyer, Lise-Lotte
    et al.
    Örebro University, Sweden.
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal College and Ersta Hospital, Stockholm and Örebro University, Sweden.
    Three nursing home residents speak about meaning at the end of life2008In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 15, no 1, p. 97-109Article in journal (Refereed)
    Abstract [en]

    This article provides a deeper understanding of how meaning can be created in everyday life at a nursing home. It is based on a primary study concerning dignity involving 12 older people living in two nursing homes in Sweden. A secondary analysis was carried out on data obtained from three of the primary participants interviewed over a period of time (18-24 months), with a total of 12 interviews carried out using an inductive hermeneutic approach. The study reveals that sources of meaning were created by having a sense of: physical capability, cognitive capability, being needed, and belonging. Meaning was created through inner dialogue, communication and relationships with others. A second finding is that the experience of meaning can sometimes be hard to realize. © 2008 SAGE Publications.

  • 73.
    Ekerstad, Niklas
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment and Health Economics. Linköping University, Faculty of Health Sciences.
    Etiskt tillstånd bör ges för forskning på svårt sjuka äldre2011In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 108, no 42, p. 2072-2073Article in journal (Other (popular science, discussion, etc.))
  • 74.
    Eklöf, Motzi
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Då tystnadsplikt ersätts av informationsdelning2014In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 111, no 43, p. 1912-1914Article in journal (Refereed)
    Abstract [en]

    The right to personal integrity and privacy is enshrined in overarching laws and regulations. Ethical codes for physicians emphasize the importance of discretion and professional confidentiality. The use of shared electronic medical records is developing into a system of direct access to extensive amounts of personal information without informed consent from patients. Confidentiality-breaching provisions in the Swedish law allow, and require, an increasing number of obligations regarding registration and disclosure. IT systems are never completely secure. The consequences of electronic medical records, in combination with legislation on a collision course with venerable ethical requirements, needs to be discussed in a broader societal context.

  • 75.
    Eklöf, Motzi
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Journalföring à 23 öre metern och etik i vården2014Other (Other (popular science, discussion, etc.))
  • 76.
    Ekstrand, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, International Maternal and Child Health (IMCH). Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Tyden, Tanja
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    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.
    Larsson, Margareta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Swedish parents’ interest in preconception genetic carrier screening2016In: Upsala Journal of Medical Sciences, ISSN 0300-9734, E-ISSN 2000-1967, Vol. 121, no 4, p. 289-294Article in journal (Refereed)
    Abstract [en]

    Introduction: Genetic technologies advance rapidly. It is possible to undergo genetic carrier screening before pregnancy to examine genetic risks to future offspring. We aimed to investigate parents’ interest and motives towards preconception genetic carrier screening (PCS) as well as factors associated with interest in PCS.

    Material and methods: Our study sample consists of 777 parent couples within the longitudinal Swedish Pregnancy Planning study. Women responded to questionnaires at three occasions: in early pregnancy, late pregnancy, and one year after childbirth. Male partners responded to one questionnaire one year after childbirth.

    Results: One-third of the parents were positive (30% versus 34% of women and men, respectively), less than a third were negative (26% versus 28%), and 45% versus 38% were uncertain about whether to consider PCS before a future pregnancy. No differences in PCS interest were found between women and men (P = 0.091), but a higher proportion of women were concerned about negative consequences (53% versus 46%, P < 0.003) and were ‘opposed to such a way of child selection’ (31.8% versus 25.2%,P = 0.002). Factors associated with PCS interest were experiences of prenatal diagnostics and positive attitudes towards finding out or choosing sex of one’s child (women), and prenatal diagnostics, self-rated poor health, and pregnancy planning (men).

    Conclusion: Both women and men had relatively high uncertainty towards PCS, but women were more concerned about negative consequences. The future extent of the clinical utility of PCS is currently unknown, but parents’ interests and doubts are important aspects to consider.

  • 77.
    El-Alti, Leila
    et al.
    Univ Gothenburg, Sweden.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Munthe, Christian
    Univ Gothenburg, Sweden.
    Person Centered Care and Personalized Medicine: Irreconcilable Opposites or Potential Companions?2019In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 27, no 1, p. 45-59Article in journal (Refereed)
    Abstract [en]

    In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications.

  • 78.
    Eldh, Ann Catrine
    et al.
    Örebro University, Sweden.
    Ekman, Inger
    Göteborg University.
    Ehnfors, Margareta
    Örebro University.
    Conditions for Patient Participation and Non-Participation in Health Care2006In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 13, no 5, p. 503-514Article in journal (Refereed)
    Abstract [en]

    This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making.

  • 79.
    Engström, Ingemar
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Ingemar Engström, Svenska Läkaresällskapet [Ingemar Engström, Swedish Society of Medicine]: [Plånboken bör inte få avgöra tillgång till nya effektiva läkemedel The wallet should not determine access to new and effective drugs]2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DEU6Article in journal (Refereed)
  • 80.
    Engström, Ingemar
    et al.
    Örebro University, School of Medical Sciences. Universitetssjukvårdens forskningscent­rum (UFC), Region Örebro County, Örebro, Sweden.
    Bengtsson, Saskia
    Mobila geriatriska teamet, Länssjukhuset Ryhov, Jönköping, Sweden.
    Vården börjar alltid med mötet2017In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114, no 42, article id ERRMArticle in journal (Refereed)
    Abstract [sv]

    Patient care always starts with an encounter Being a doctor is essentially a moral enterprise and all kinds of care begin with the encounter with the patient. This encounter occurs at the intersection of the patient's need for assistance and the doctor's professional knowledge. The meeting can be characterised by paternalism, autonomy or participation. It is important to regard the patient as a person and explore his or her perceptions, apprehensions and expectations early in the meeting. All decisions in medicine rely on both facts and values. It is, therefore, important that both the doctor's and the patient's values and preferences are out in the open. The medical encounter is always asymmetrical, which necessitates that the power perspective be acknowledged.

  • 81.
    Engström, Ingemar
    et al.
    Psykiatriskt forskningscentrum, Örebro, Sweden.
    Lynøe, Niels
    Centrum för hälso-och sjukvårdsetik, Karolinska institutet, Stockholm, Sweden.
    Tio myter att avliva om medicinsk etik2010In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 107, no 40, p. 2419-21Article in journal (Refereed)
  • 82.
    Engström, Ingemar
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Ågård, Anders
    Etiken och juridiken tydlig kring livsuppehållande behandling [Ethics and jurisprudence concerning life-sustaining treatment is clear]2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DSCWArticle in journal (Refereed)
  • 83.
    Engström, Ingemar
    et al.
    Universitetssjukvårdens forskningscentrum, Region Örebro Län, Örebro, Sverige.
    Ågård, Anders
    Sahlgrenska universitetssjukhuset, Göteborg, Sverige.
    Läkarens viktiga möte med patienten2017In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114, article id ESC3Article in journal (Refereed)
  • 84.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    The contribution of neuroethics to international brain research initiatives2017In: Nature Reviews Neuroscience, ISSN 1471-003X, E-ISSN 1471-0048, Vol. 18, no 1, p. 1-2Article in journal (Refereed)
  • 85.
    Evers, Kathinka
    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.
    Changeux, Jean-Pierre
    CNRS, UMR 3571, Coll France, Paris, France.;CNRS, UMR 3571, Inst Pasteur, Paris, France..
    Proactive epigenesis and ethical innovation2016In: EMBO Reports, ISSN 1469-221X, E-ISSN 1469-3178, Vol. 17, no 10, p. 1361-1364Article in journal (Refereed)
  • 86.
    Evers, Kathinka
    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.
    Changeux, Jean-Pierre
    Inst Pasteur, Paris, France.;Coll France, Paris, France..
    Proactive epigenesis and ethics - Response2017In: EMBO Reports, ISSN 1469-221X, E-ISSN 1469-3178, Vol. 18, no 8, p. 1272-1272Article in journal (Other academic)
  • 87.
    Evers, Kathinka
    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.
    Giordano, James J.
    Departments of Neurology and Biochemistry, Neuroethics Studies Program-Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, DC, United States.
    The Utility- and Use–of Neurotechnology to Recover Consciousness: Technical and Neuroethical Considerations in Approaching the "Hard Question" of Neuroscience2017In: Frontiers in Human Neuroscience, ISSN 1662-5161, E-ISSN 1662-5161, Vol. 11, p. 1-3, article id 564Article in journal (Other academic)
  • 88.
    Evers, Kathinka
    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.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Theoretical Framing of Neuroethics: The Need for a Conceptual Approach2017In: Debates About Neuroethics: Perspectives on Its Development, Focus, and Future / [ed] Eric Racine; John Aspler, Springer Publishing Company, 2017, 1, p. 89-107Chapter in book (Refereed)
    Abstract [en]

    There are different dominant perspectives, theories, and methodologies within neuroethics, each importantly shaping the identification, understanding, and discussion of the relevant ethical, social, philosophical and scientific issues. In this chapter, we first provide a brief overview of current neuroethical approaches calling attention to a common tendency to underestimate the role and value of conceptual analysis. Against that background, we present and develop the theoretical framework of fundamental neuroethics. Next, we suggest that neuroethics should be built on the sound scientific and philosophical foundations of informed materialism. Finally, we apply the proposed theoretical framework to the neuroethical discussion of brain simulation.

  • 89.
    Evers, Kathinka
    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.
    Stjernschantz Forsberg, Joanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eliason, James F.
    What are your views on commercialization of tissues for research?2012In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 10, no 6, p. 476-478Article in journal (Refereed)
  • 90.
    Evers, Kathinka
    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.
    Stjernschantz Forsberg, Joanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Commercialization of Biobanks2012In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 10, no 1, p. 45-47Article in journal (Refereed)
    Abstract [en]

    Biobank policy and regulations profoundly vary between different societies. One area with profound differences in culture and tradition concerns commercialization, and the possibility of using the human body as a capital resource. In the United States there is acceptance of this possibility, whereas European law is based on principles that categorically prohibit selling parts of the human body. We suggest that questions of commercialization in the area of biobanking must be considered in relation to different ethical values, notably the principle of best possible use of collected biobank materials for the benefit of vital patient interests.

  • 91.
    Falkenström, Erica
    et al.
    Stockholm University, Faculty of Social Sciences, Stockholm Centre for Organizational Research (SCORE).
    Höglund, Anna T.
    På spaning efter etik: Etisk kompetens och ansvarstagande för ledning och styrning av hälso- och sjukvården2018Book (Other academic)
    Abstract [sv]

    Kraven på vårdens professioner och chefer är höga. De förväntas ge en god och säker vård på lika villkor till hela befolkningen, administrera, prioritera och arbeta kostnadseffektivt. Men hälso- och sjukvården fungerar inte som den ska. Arbetsmiljön är osund, sjuksköterskor lämnar yrket, vården är ojämlik och svårt sjuka patienter får vänta i långa köer. Detta gör att människors liv, hälsa och värdighet står på spel.

    På spaning efter etik uppmärksammar tre nyckelgrupper av aktörer som genom sina beslut har ett stort inflytande över vårdens villkor: politiker, opolitiska chefstjänstemän och vårdgivarnas högsta chefer i landstingets ledningsorganisation. Hur ser de på sitt etiska ansvar för hälso- och sjukvården? Vilka etiska bedömningar och konsekvensanalyser gör de? Och vilken etisk kompetens fordras för att de ska kunna ta ett etiskt ansvar för vårdens villkor genom ledning, styrning och organisation på den regionala nivån – och därmed för att samhällsmedborgarna ska kunna känna tillit till att vården fungerar som den ska?

    Boken är ett resultat av ett tvärvetenskapligt empirisk forskningsprojekt, finansierat av AFA Försäkring, som har bedrivits på Stockholms centrum för forskning om offentlig sektor, Score.

  • 92.
    Falkenström, Erica
    et al.
    Stockholm Univ, S-10691 Stockholm, Sweden..
    Ohlsson, Jon
    Stockholm Univ, S-10691 Stockholm, Sweden..
    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.
    Developing ethical competence in healthcare management2016In: Journal of Workplace Learning, ISSN 1366-5626, E-ISSN 1758-7859, Vol. 28, no 1, p. 17-32Article in journal (Refereed)
    Abstract [en]

    Purpose - The purpose of this paper was to explore what kind of ethical competence healthcare managers need in handling conflicts of interest (COI). The aim is also to highlight essential learning processes to develop healthcare managers' ethical competence. Design/methodology/approach - A qualitative study was performed. Semi-structured interviews with ten Swedish healthcare managers from different care providers were carried out twice and analysed through step-wise categorisation. Findings - Four categories of COI were revealed and two ways (passive and active) in which COI were handled. Ethical guidelines did not help the healthcare managers to handle the COI, and none of the managers made use of any sort of systematic ethical analysis. However, certain ethical competence was of great importance to identify and handle COI, consisting of contextual understanding, rational emotions, some theoretical knowledge and a suitable language. Organising work so that ethical analysis can be carried out is of great importance, and top management needs to clearly express the importance of ethical competence and allocate resources to allow adequate learning processes. Originality/value - This paper highlights the management level and focuses on how work-integrated learning-processes can enable ethical competence. Ethical competence at the management level is essential both to comply with the constitution and legal requirements regarding healthcare, and so that managers are able to analyse COI and justify their decisions.

  • 93.
    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.
    “Cerebral Communication” With Patients With Disorders of Consciousness.: Clinical Feasibility and Implications2015In: AJOB Neuroscience, ISSN 2150-7740, E-ISSN 2150-7759, Vol. 6, no 2, p. 44-46Article in journal (Refereed)
  • 94.
    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.
    Neurotechnology–mediated communication: a new tool for personal rights of patients with disorders of consciousness?2016In: Mind, brain and education at Erice: ten years / [ed] Antonio M. Battro, Kurt W. Fischer & María Lourdes Majdalani, Erice: Ettore Majorana Foundation , 2016, p. 149-152Chapter in book (Other academic)
    Abstract [en]

    In the inspiring and friendly environment of the ninth International Summer School on Mind, Brain and Education, titled Body, Brain and Personal Identity: Historical and Contemporary Perspectives, and directed by Antonio M. Battro, Kurt W. Fischer and Fernando Vidal, I presented the provisional results of my investigation of the impact of neurotechnology on the speechless subjects’ ability to communicate. In particular, I focused on the possible use of neurotechnology to communicate with comatose patients. 

  • 95.
    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.
    Alleva, Enrico
    Italian National Institute of Health.
    Chiarotti, Flavia
    Italian National Institute of Health.
    Macrì, Simone
    Italian National Institute of Health.
    Petrini, Carlo
    Italian National Institute of Health.
    Clinicians’ attitudes towards patients with disorders of consciousness: a survey2014In: Neuroethics, ISSN 1874-5490, E-ISSN 1874-5504, Vol. 7, no 1, p. 93-104Article in journal (Refereed)
    Abstract [en]

    Notwithstanding fundamental methodological advancements, scientific information about disorders of consciousness (DOCs)—e.g. Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS) and Minimally Conscious State (MCS)—is incomplete. The possibility to discriminate between different levels of consciousness in DOC states entails treatment strategies and ethical concerns. Here we attempted to investigate Italian clinicians’ and basic scientists’ opinions regarding some issues emerging from the care and the research on patients with DOCs. From our survey emerged that Italian physicians working with patients with DOCs give a central role to ethics. Current Italian regulation regarding basic research conducted in patients with DOCs apparently risks to be inadequate to support scientific advancement, and would deserve a different assessment compared to ordinary treatments. We think the results of our survey deserve attention from an international audience because they exemplify the difficulty to define a shared approach to the issues related to patients with DOCs and the necessity to better assess both the ordinary and experimental treatment of patients with DOCs at the ethical and legal level.

  • 96.
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Petrini, Carlo
    Biomedical research involving patients with disorders of consciousness: ethical and legal dimensions2014In: Annali dell'Istituto Superiore di Sanità, ISSN 0021-2571, Vol. 50, no 3, p. 221-228Article in journal (Refereed)
    Abstract [en]

    The directive 2001/20/UE and the research involving patients with docs. Researchinvolving patients with disorders of consciousness (DOCs) deserves special ethical andlegal attention because of its Janus-faced nature. On the one hand, it raises concernsabout the risk to expose the involved subjects to disproportionate risks not respectingtheir individual dignity, particularly their right to be cared for; on the other hand, researchis an essential tool in order to improve the clinical condition of patients withDOCs. The present paper concerns the ethical and legal dimensions of biomedical researchinvolving patients with disorders of consciousness. In particular, it focuses oninformed consent to experimental treatments, which is a challenging issue both from anethical and legal point of view. The first part reads the Directive 2001/20/EU in the lightof the experimentation of patients with DOCs, and suggests a revision in order to betterassess the issue of informed consent.The particular case of informed consent for observational studies of non-communicativepatients. The second part presents an informed consent form for studies throughvideo-recording of patients unable to communicate their own consent. This form hasbeen elaborated by the bioethics unit of the project “Review of the nosography of vegetativestates: application of methods of behavioral analysis to individuals in coma orvegetative state” developed at the Italian National Institute of Health.Relevance of the suggested form. The paper describes the conceptual framework ofthe form for informed consent to studies through video-recoding, which is a relevantexample of what issues should be included in an informed consent for any type of studiesthrough video-recording of patients unable to express their own consent. The article hasbeen sent on November the 7th 2013, before the adoption of the Regulation (EU) no.536/2014 (and consequent abrogation of the Directive 2001/20/EU) and the release ofthe new edition of the Italian Code of Medical Ethics.

  • 97.
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Centro de Investigaciones Filosoficas.
    Big Science, Brain Simulation and Neuroethics2016In: AJOB Neuroscience, ISSN 2150-7740, E-ISSN 2150-7759, Vol. 7, no 1, p. 28-30Article in journal (Refereed)
    Abstract [en]

    We believe that it is valuable to investigate conceptual understandings of the brain andof simulation in order to better grasp the ethical implicationsof simulation technology in particular. Such conceptualexamination is offered by fundamental neuroethics. Inthis commentary we propose a reading of simulationwithin the framework of fundamental neuroethics.

  • 98.
    Farisco, Michele
    et al.
    Biogem – Istituto di ricerche genetiche, Ariano Irpino, Avellino.
    Ferrigno, Luigina
    Petrini, Carlo
    Rosmini, Francesco
    Codici, linee guida e commentari di etica della ricerca: la questione della qualità2014In: Epidemiologia & Prevenzione, ISSN 1120-9763, Vol. 38, no 3-4, p. 268-272Article in journal (Refereed)
    Abstract [en]

    After an overview of the evolution of ethics laws for medical activities, we suggest a possible classification of documents regarding the ethical conduct of scientific research with human beings. The authors outline the necessity to define formal criteria for the development and the implementation of ethics standards.

  • 99.
    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
    Italian National Institute of Health.
    Ethical Frameworks and Comparative Effectiveness Research2015In: Comparative Effectiveness Research in Health Services / [ed] Levy A & Sobolev B, New York: Springer Science+Business Media B.V., 2015, p. 1-37Chapter in book (Refereed)
    Abstract [en]

    The issue of comparative effectiveness research (CER) is assessed from an ethical point of view by comparison with the main ethical frameworks and by analysis of some of the relevant institutional documents. Two main conclusions emerge from the study: no ethical framework seems able to objectively and definitively assess CER; no institutional document, neither national nor international, has specifically assessed the ethical implications of CER. Nevertheless, this vacuum regarding CER raises relevant ethical concerns, thus revealing the necessity and urgency of an ethical evaluation of CER.

  • 100.
    Farisco, Michele
    et al.
    Department of Philosophy, Pontifical Faculty of Theology of Southern Italy S. Thomas, Naples, Italy .
    Petrini, Carlo
    Italian National Institute of Health.
    Medical Responsibility and Clinical Guidelines: A Few Remarks from Two Italian Juridical Cases2012In: Medicine Studies, ISSN SSN: 1876-4533 (print version) ISSN: 1876-4541 (electronic version), Vol. 3, no 3, p. 157-169Article in journal (Refereed)
    Abstract [en]

    Purpose

    The aim of this paper is to assess the complex issue of responsibility in clinical practice. The paper focuses mainly on the relationship between personal- and medical-professional responsibility of practitioners and clinical guidelines.

    Methods

    After a theoretical review of the different definitions of responsibility in selected bioethical and biojuridical literature, two recent juridical proceedings concerning medical responsibility from Italian Courts are discussed. Subsequently, a theoretical analysis of the definition of clinical practice guidelines is proposed in order to show their feasibility to assess personal- and medical-professional responsibility.

    Results

    The definitions of responsibility and the two Italian cases show the theoretical and practical difficulties of shared assessments of both personal-professional and medical-professional responsibility in clinical practice. Clinical practice guidelines cannot be assumed as an objective code of action stating exactly a rule of conduct in all situations, but as a tool suggesting how to decide what to do in different conditions.

    Conclusions

    Responsibility in clinical practice is such a complex issue to deserve a special ethical assessment. The clinician’s personal-professional responsibility cannot be replaced or reduced by clinical practice guidelines, because medicine is as such a relationship focused on the expertize of practitioners. Nonetheless, a shared approach to different clinical conditions is needed in order to avoid a relativist outcome and protect patients’ and even clinicians’ rights. Formal guidelines (that describe not exactly what to do but how to decide what to do) are proposed as potential useful tool to achieve this aim.

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