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  • 351.
    Tinghög, Gustav
    Linköping University, Department of Management and Engineering, Economics. Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Discounting, Preferences, and Paternalism in Cost-Effectiveness Analysis2012In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 20, no 3, p. 297-318Article in journal (Refereed)
    Abstract [en]

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

  • 352.
    Tännsjö, Torbjörn
    Stockholm University, Faculty of Humanities, Department of Philosophy.
    Ought We to Enhance Our Cognitive Capacities?2009In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 23, no 7, p. 421-432Article in journal (Refereed)
    Abstract [en]

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

  • 353.
    Valenzuela, Sergio
    et al.
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Aliaga, Verónica
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Burdiles, Patricio
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Carvallo, Aurelio
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Díaz, Eduardo
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Guerrero, Manuel
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Rueda, Laura
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Valenzuela, Carlos
    Comisión de Ética, Facultad de Medicina, Universidad de Chile, Santiago, Chile.
    Reflexiones en torno a la ley N° 20.584 y sus implicancias para la investigación biomédica en Chile2015In: Revista Médica de Chile, ISSN 0034-9887, Vol. 143, no 1Article in journal (Refereed)
    Abstract [en]

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

  • 354. van El, Carla G
    et al.
    Cornel, Martina C
    Borry, Pascal
    Hastings, Ros J
    Fellmann, Florence
    Hodgson, Shirley V
    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.
    Cambon-Thomsen, Anne
    Knoppers, Bartha M
    Meijers-Heijboer, Hanne
    Scheffer, Hans
    Tranebjaerg, Lisbeth
    Dondorp, Wybo
    de Wert, Guido M W R
    Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics.2013In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 21, no 6, p. 580-4Article in journal (Refereed)
  • 355.
    Vears, D. F.
    et al.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    Niemiec, Emilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Univ Bologna, Erasmus Mundus Joint Int Doctoral PhD Degree Prog, Bologna, Italy;Univ Turin, Dept Law, Turin, Italy;Leibniz Univ Hannover, Cte Eth & Law Life Sci, Hannover, Germany.
    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.
    Borry, P.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings?: A content analysis2018In: Clinical Genetics, ISSN 0009-9163, E-ISSN 1399-0004, Vol. 94, no 3-4, p. 321-329Article in journal (Refereed)
    Abstract [en]

    Whole exome and whole genome sequencing are increasingly being offered to patients in the clinical setting. Yet, the question of whether, and to what extent, unsolicited findings (UF) and/or secondary findings (SF) should be returned to patients remains open and little is known about how diagnostic consent forms address this issue. We systematically identified consent forms for diagnostic genomic sequencing online and used inductive content analysis to determine if and how they discuss reporting of UF and SF, and whether patients are given options regarding the return of these results. Fifty-four forms representing 38 laboratories/clinics were analyzed. A quarter of the forms did not mention UF or SF. Forms used a variety of terms to discuss UF and SF, sometimes using these interchangeably or incorrectly. Reporting policies for UF varied: 5 forms stated that UF will not be returned, 15 indicated UF may be returned, and 28 did not specify their policy. One-third indicated their laboratory returns SF. Addressing inconsistent terminology and providing sufficient information about UF/SF in consent forms will increase patient understanding and help ensure adequate informed consent.

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

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

  • 357.
    Viberg, Jennifer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Centre for Gender Research.
    Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks2015In: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Chapter in book (Refereed)
  • 358.
    Viberg, Jennifer
    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.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics.
    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.
    Freedom of Choice about Incidental Findings can frustrate participants’ true preferences2016In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 3, p. 203-209Article in journal (Refereed)
    Abstract [en]

    Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic.

    In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice.

    Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

  • 359.
    Wall, Stig
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Byass, Peter
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Bindslev, Anne
    Sutton, Caroline
    Supplements used to advantage2010In: Global Health Action, ISSN 1654-9716, E-ISSN 1654-9880, Global health action, ISSN 1654-9880, Vol. 3, p. Article nr 5166-Article in journal (Refereed)
    Abstract [en]

    A recent (January 2010) editorial in The Lancet addressing the “perils of journal and supplement publishing” states in no unclear terms that the publishing of commercially sponsored supplements is “firmly off the agenda” for The Lancet. The editorial notes that although supplements and custom publications are an established element in journal publishing, supplemental material “is usually much inferior to that of any parent title” and is generally problematic for editors and reviewers. On this note, The Lancet goes on to identify examples of commercial supplement publications that support this view, including a recent example that had fallen into their own hands.

  • 360. Wallsten, Tuula
    et al.
    Kjellin, Lars
    Sjöberg, Rickard L
    [The respectful compulsion. Evidence and ethics in compulsory psychiatric care].2009In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 106, no 11Article in journal (Refereed)
  • 361. Weber, Christian
    et al.
    Fijalkowska, Barbara
    Ciecwierska, Katarzyna
    Lindblad, Anna
    Badura-Lotter, Gisela
    Andersen, Peter M.
    Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Neuroscience.
    Kuzma-Kozakiewicz, Magdalena
    Ludolph, Albert C.
    Lule, Dorothee
    Pasierski, Tomasz
    Lynoee, Niels
    Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?2017In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 16, article id 80Article in journal (Refereed)
    Abstract [en]

    Background: Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient’s choices will be addressed in the current debate.

    Main text: In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying.

    Conclusion: According to the presented data, regulations of terminating life-sustaining treatments and the framework of “informed consent” are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

  • 362.
    Welin, Stellan
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Donationsutredningen öppnar för nya organdonatorer: Kräver reflexion om människovärdesprincipen och samtycke2017In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114Article in journal (Refereed)
    Abstract [en]

    Swedish white paper on donation can give more donors without compromising ethics The White Paper on organ donation (SOU 2015:84) proposes new regulations for organ donation. In particular it spells out that it is permissible to take medical steps to preserve organs while the patient is still alive. It is proposed that this should be allowed after the medical team has declared that the continuation of life sustaining treatment is futile. The white paper opens up for donation after cardiac death. There has been some critique of the white paper for lack of deeper ethical discussions. The ethical issues pertaining to the proposals are discussed in this paper. It is concluded that the proposals are ethically acceptable. The human dignity principle will however demand that the decision to end life sustaining treatment is taken regardless of whether the patient is a possible organ donor or not.

  • 363.
    Wendel, Lotta
    Umeå University, Faculty of Social Sciences, Department of Law.
    Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK2007In: The Ethics and Governance of Human Genetic Databases: European Perspectives / [ed] Matti Häyry, Ruth Chadwick, Vilhjálmur Árnason & Gardar Árnason, Cambridge: Cambridge University Press, 2007, no 4, p. 108-119Chapter in book (Other academic)
  • 364.
    Werkander Harstäde, Carina
    et al.
    Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Blomberg, Karin
    Örebro University, School of Health Sciences.
    Benzein, Eva
    Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden.
    Östlund, Ulrika
    Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden; Centre for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden; Centre for Research & Development, Uppsala University, Gävle, Sweden; Region Gävleborg, Gävle, Sweden.
    Dignity-conserving care actions in palliative care: an integrative review of Swedish research2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 8-23Article in journal (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.

  • 365.
    Widén, Louise
    et al.
    Halmstad University, School of Social and Health Sciences (HOS).
    Andersson, Emma
    Halmstad University, School of Social and Health Sciences (HOS).
    Den som inget frågar, får inget veta: Sjuksköterskors professionella möte med våldsutsatta kvinnor2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [sv]

    Våld mot kvinnor är ett stort problem i dagens samhälle. Våldet har stora effekter på kvinnors hälsa och sjukvården har ett optimalt läge i att upptäcka och hjälpa kvinnorna ur våldssituationen. Sjuksköterskan är ofta den första inom vården som möter kvinnorna. Möten med våldsutsatta kvinnor omges av utmaningar för sjuksköterskan både på ett professionellt och personligt plan. Syftet med studien var att belysa bemötande och omhändertagande av våldsutsatta kvinnor ur ett sjuksköterskeperspektiv. Utifrån analys av 12 vetenskapliga artiklar framkom fyra faktorer som arbetets resultat bygger på. För att sjuksköterskor skall vårda våldsutsatta kvinnor på ett optimalt vis behövs kunskap om våld, ett bra förhållningssätt gentemot patienten, god hantering av egna känslor samt förståelse av miljöns betydelse. Samtliga faktorer har ett stort samband med varandra och är grundläggande för sjuksköterskor i mötet med våldsutsatta kvinnor. Pågående forskning inriktas på att fördjupa kunskap och insatsmetoder för organisationer och myndigheter i bekämpandet av våld. Grundutbildningen för sjuksköterskor borde inkludera undervisning om våld i närarelation och förbereda sjuksköterskor för att kunna hantera den emotionella press som kan uppstå i mötet med våldsdrabbade kvinnor. 

  • 366.
    Wijma, Barbro
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Children's and Women's health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, Department of Gynaecology and Obstetrics in Linköping.
    Persson, Alma
    Linköping University, Department of Thematic Studies, The Department of Gender Studies. Linköping University, Faculty of Arts and Sciences.
    Ockander, Marlene
    Jönköping Academy for Improvement of Health and Welfare, Jönköping University.
    Brüggemann, Jelmer
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Kränkningar i vården är vanligt förekommande: Viktigt med aktivt arbete mot att patienter kränks2019In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, p. 1-6Article in journal (Other academic)
    Abstract [sv]

    Trots goda intentioner hos vårdpersonal upplever patienter ofta möten i vården som misslyckade. Det kan vara möten där patienten har fått en helt korrekt medicinsk behandling, men av andra anledningar upplever sig kränkt eller överkörd. Ofta lägger vårdgivare inte ens märke till att det sker. Om patienten i efterhand försöker få upprättelse är det heller inte säkert att ett sådant samtal når sitt syfte. Ämnet kränkningar i vården är tabubelagt och känslomässigt laddat. För att ge legitimitet åt insatser att hjälpa personal att motverka kränkningar behövs därför en god kunskapsbas.

    Med denna utgångspunkt startades för 20 år sedan ett nytt forskningsfält om kränkningar i vården vid enheten för genus och medicin, Linköpings universitet. I denna artikel redovisar forskargruppen några av sina resultat och lärdomar.

  • 367.
    Wiss, Johanna
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Healthcare Priority Setting and Rare Diseases: What Matters When Reimbursing Orphan Drugs2017Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The rarity of a disease can give rise to challenges that differ from conventional diseases. For example, rarity hampers research and development of new drugs, and patients with severe, rare diseases have limited access to qualified treatments. When drugs are available, clinical evidence has higher uncertainty and the drugs can be very expensive. When setting priorities in the healthcare sector, treatments aimed at patients with rare diseases, so called orphan drugs, have become a source of concern. Orphan drugs seldom show solid evidence of effectiveness or cost-effectiveness. Still, treatments for rare disease patients, available on the European market, has increased rapidly since the adoption of a regulation offering incentives for research and development of orphan drugs. The question arises as to whether the publicly funded health care system should provide such expensive treatments, and if so, to what extent.

    This doctoral thesis aims to investigate healthcare priority setting and rare diseases in the context of orphan drug reimbursement. Priority setting for orphan drugs is located at the intersection of economic, ethical and psychological perspectives. This intersection is explored by studying the public’s view on the relevance of rarity when setting priorities for orphan drugs, and by examining how orphan drugs are managed when making reimbursement decisions in practice. Papers I and II in this thesis employ quantitative, experimental methods in order to investigate preferences for prioritising rare diseases, and the extent to which psychological factors influence such preferences. Papers III and IV employ qualitative methods to further explore what factors (apart from rarity) influence priority-setting decisions for orphan drugs, as well as how decisions regarding orphan drugs are made in practice in England, France, the Netherlands, Norway and Sweden. Combining quantitative and qualitative methods has provided a more comprehensive understanding of the topic explored in the thesis, and the methods have complemented each other.

    Paper I shows that there is no general preference for giving higher priority to rare disease patients when allocating resources between rare and common disease patients. However, results show that preferences for treating the rare patients are malleable to a set of psychological factors, in particular “proportion dominance”. Paper II shows that the identifiability of an individual has no, or a negative, influence on the share of respondents choosing to allocate resources to him/her (compared to a nonidentified individual). Paper III confirms that rarity per se is not seen as a factor that should influence priority-setting decisions (i.e. accept a greater willingness to pay for orphan drugs), however, other factors such as disease severity, treatment effect and whether there are treatment alternatives were seen as relevant for consideration. Paper IV explores the challenges with and solutions for orphan drug reimbursement, as perceived by different actors in five European countries. Perceived challenges are related to the components involved when making reimbursement decisions, to the reimbursement system, and to the acceptance of the final decision. Solutions are either specific for orphan drugs, or general measures that can be used for orphan drugs as well as for other drugs.

    In conclusion, priority setting for orphan drugs is complex and requires particular attention from decision makers. There are many factors to consider when making reimbursement decisions for orphan drugs. The consequences of a decision are potentially severe (both for rare disease patients and for common disease patients, depending on the decision) and psychological factors can potentially influence decisions.

  • 368.
    Yuksekdag, Yusuf
    Linköping University, Department of Culture and Communication, Centre for Applied Ethics. Linköping University, Faculty of Arts and Sciences.
    Against Cursory Treatments in Ethics of Medical Migration from Underserved Countries2017In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 14, no 2, p. 173-176Article in journal (Refereed)
    Abstract [en]

    In a recent paper, Mpofu, Gupta, and Hays attempt to outline the obligations of recruiting high income countries (HICs) and would-be emigrant health workers (HWs) to tackle the effects of mass exodus of health workers from underserved regions. They reconstruct (i) Rawlsian and Kantian global justice approaches to argue for moral obligations of HICs and (ii) an individual justice approach to point to 'non-enforceable' social responsibilities of HWs to assist their compatriots. This critical paper demonstrates that the argumentation within their individual justice approach is problematic on the basis of three reasons: (1) their discussion under-theorizes and undervalues the individual rights and more specifically the right to exit, (2) their argumentation in the latter part, even if problematically, does rather point to moral obligations in lieu of 'social responsibilities' of HWs, and (3) they overlook many other important freedoms, interests and values pertinent to the issue of retention.

  • 369.
    Yuksekdag, Yusuf
    Linköping University, Department of Culture and Communication, Centre for Applied Ethics. Linköping University, Faculty of Arts and Sciences.
    Health Without Care? Vulnerability, Medical Brain Drain, and Health Worker Responsibilities in Underserved Contexts2018In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 26, no 1, p. 17-32Article in journal (Refereed)
    Abstract [en]

    There is a consensus that the effects of medical brain drain, especially in the Sub-Saharan African (SSA) countries, ought to be perceived as more than a simple misfortune. Temporary restrictions on the emigration of health workers from the region is one of the already existing policy measures to tackle the issue - while such a restrictive measure brings about the need for quite a justificatory work. A recent normative contribution to the debate by Gillian Brock provides a fruitful starting point. In the first step of her defence of emigration restrictions, Brock provides three reasons why skilled workers themselves would hold responsibilities to assist with respect to vital needs of their compatriots. These are fair reciprocity, duty to support vital institutions, and attending to the unintended harmful consequences of one's actions. While the first two are explained and also largely discussed in the literature, the third requires an explication on how and on which basis skilled workers would have a responsibility as such. In this article, I offer a vulnerability approach with its dependency aspect that may account for why the health workers in underserved contexts would have a responsibility to attend to the unintended side effects of their actions that may lead to a vital risk of harm for the population. I discuss HIV/AIDS care in Zimbabwe as a case in point in order to show that local health workers may have responsibilities to assist the population who are vulnerable to their mobility.

  • 370.
    Yuksekdag, Yusuf
    Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Culture and Communication, Centre for Applied Ethics. University of Bern, Switzerland.
    The Right to Exit and Skilled Labour Emigration: Ethical Considerations for Compulsory Health Service Programmes2019In: Developing World Bioethics, ISSN 1471-8731, E-ISSN 1471-8847, Vol. 19, no 3, p. 169-179Article in journal (Refereed)
    Abstract [en]

    Compulsory (health) service contracts have recently received considerable attention in the normative literature. The service contracts are considered and offered as a permissible and liberal alternative to emigration restrictions if individuals relinquish their right to exit via contract in exchange for the state-funded tertiary education. To that end, the recent normative literature on the service programmes has particularly focused on discussing the circumstances or conditions in which the contracts should be signed, so that they are morally binding on the part of the skilled workers. However, little attention is devoted to the relevance of the right to exit for the debate on compulsory service programmes. In this paper, I argue that even if the service contracts are voluntary, and thus the would-be medical students voluntarily relinquish their right to exit, the reasons behind the right should be taken into account for the contracts to be morally valid. A clear understanding of the right to exit is a must in order not to breach its basic components and for the service contracts to be morally binding. To that end, I provide two accounts of the reasons to value the right to exit by presenting Patti Lenard’s discussion of the right and by reconstructing James Griffin’s account of human rights. I conclude by offering brief ethical considerations for compulsory health service programmes grounded in the reasons to value the right to exit.

  • 371.
    Zbikowski, Ancke
    et al.
    Linköpings universitet.
    Brüggemann, Adrianus Jelmer
    Linköpings universitet.
    Wijma, Barbro
    Linköpings universitet.
    Zeiler, Kristin
    Linköpings universitet.
    Swahnberg, Katarina
    Linköpings universitet.
    Ethical guidelines and the prevention of abuse in healthcare2012In: European Journal of Obstetrics, Gynecology, and Reproductive Biology, ISSN 0301-2115, E-ISSN 1872-7654, Vol. 165, no 1, p. 18-28Article in journal (Refereed)
    Abstract [en]

    Objective

    In obstetrical and gynaecological healthcare, patients often find themselves in a vulnerable position. Sensitive issues such as sexual and reproductive health are addressed and certain procedures can be experienced as abusive. According to research a lifetime prevalence of abuse in healthcare (AHC) can be assumed for 13–28% of female patients in the Nordic countries. In the present study we analyse the content of ethical documents for healthcare professionals within obstetrics and gynaecology in Sweden, in order to find out to what extent ethical guidelines consider issues that have shown to be related to the occurrence of AHC.

    Study design

    We searched the literature to find empirical data on AHC. Guidelines for nurses, midwives and physicians were selected. After developing an analytical framework based on the empirical data the content of the ethical guidelines was analysed.

    Results

    The various ethical guidelines for staff working within obstetrics and gynaecology differ distinctively from each other regarding their content of issues that are related to AHC. Issues that were mostly disregarded were: considering the patient's perspective and the patients’ possible experience of violence, considering power imbalances within healthcare, sexual misconduct, how to deal with other professional's ethical misconduct and how professionals relate to each other. We found the ethical guidelines of the International Federation of Gynecology and Obstetrics (FIGO) and of the International Confederation of Midwives to be those which contained most of the issues that have empirically shown to be important in regard to AHC.

    Conclusion

    While staff members from different professions may share responsibility for the same patient, their ethical guidelines vary considerably. To become a possible resource for prevention of AHC, we suggest that ethical guidelines in healthcare should be revised following empirical research on ethical conduct. As ethical guidelines cannot be effective by their existence only, we would like to initiate a discussion on the function and use of ethical guidelines in general and regarding AHC in particular. Being aware that ethical guidelines are only a part of ethics in healthcare, however, we envision a broader approach to the aim of preventing AHC, where research is encouraged on how a virtue ethics approach could be applied.

  • 372.
    Zbikowski, Anke
    et al.
    Linköping University.
    Zeiler, Kristin
    Linköping University.
    Swahnberg, Katarina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linköping University.
    Forum Play as a method for learning ethical practice: a qualitative study among Swedish health care staff2016In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 11, no 1, p. 9-18Article in journal (Refereed)
    Abstract [en]

    Background In Scandinavia 13–28% of gynecology patients have experienced abuse in health care in their life time, which contradicts the ethical obligations not to harm the patient and to protect the patient's dignity. Concerning learning to act ethically, scholars have emphasized the importance of combining theoretical and practical dimensions. This article explores Forum Play as a way of learning to act ethically in abusive situations in health care.

    Method Ten health-care workers participating in a Forum Play course took part in this study. To explore participants' experiences of Forum Play, semi-structured interviews were conducted and processed by using the grounded theory analysis techniques of coding and constant comparison.

    Results The analysis resulted in the core category "developing response–ability." It encompasses the processes bringing about the ability to respond adequately to situations where abuse occurs and the conditions for these processes, as well as the participants' achieved understanding of the third person's potential to act in a situation with a power imbalance. Forum Play allows participants to reflect on both verbal and body language, and gives them time to enact and think through issues of moral agency.

    Conclusion The simulated reality of Forum Play offers a platform where learning to act ethically in abusive situations in health care is facilitated by providing a safe space, suspending constricting structural conditions such as hierarchies and lack of time, fostering moral imagination, allowing creativity in developing and trying out a variety of acting alternatives, and reflecting upon the observed and experienced situation.

  • 373.
    Zbikowski, Anke
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Department for Obstetrics and Gynecology, Ryhov County Hospital, Jönköping, Sweden .
    Zeiler, Kristin
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Swahnberg, Katarina
    Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden .
    Forum Play as a method for learning ethical practice: A qualitative study among Swedish health-care staff2016In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 11, no 1, p. 9-18Article in journal (Refereed)
    Abstract [en]

    Background: In Scandinavia 13–28% of gynecology patients have experienced abuse in health care in their life time, which contradicts the ethical obligations not to harm the patient and to protect the patient's dignity. Concerning learning to act ethically, scholars have emphasized the importance of combining theoretical and practical dimensions. This article explores Forum Play as a way of learning to act ethically in abusive situations in health care.

    Method: Ten health-care workers participating in a Forum Play course took part in this study. To explore participants' experiences of Forum Play, semi-structured interviews were conducted and processed by using the grounded theory analysis techniques of coding and constant comparison.

    Results: The analysis resulted in the core category “developing response–ability.” It encompasses the processes bringing about the ability to respond adequately to situations where abuse occurs and the conditions for these processes, as well as the participants' achieved understanding of the third person's potential to act in a situation with a power imbalance. Forum Play allows participants to reflect on both verbal and body language, and gives them time to enact and think through issues of moral agency.

    Conclusion: The simulated reality of Forum Play offers a platform where learning to act ethically in abusive situations in health care is facilitated by providing a safe space, suspending constricting structural conditions such as hierarchies and lack of time, fostering moral imagination, allowing creativity in developing and trying out a variety of acting alternatives, and reflecting upon the observed and experienced situation.

  • 374.
    Zeiler, Kristin
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    On the Autós of Autonomous Decision Making: Intercorporeality, Temporality, and Enacted Normativities in Transplantation Medicine2018In: Existential Medicine: Essays on Health and Illness / [ed] Kevin Aho, London and New York: Rowman & Littlefield International, 2018, p. 81-100Chapter in book (Refereed)
    Abstract [en]

    This chapter brings phenomenological philosophy to bioethics debates about decision-making in transplantation medicine in general and parental live kidney donation in specific. It clarifies why both discussions of parental live kidney donation in terms of coercion (Kärrfelt et al 2004) and as “indicative” of parents’ autonomy (if it expresses what they want or who they want to be, see Crouch and Elliot 1999) fail to make sense of the complexity of the situation. Noting that the rich literature that explores relational aspects of subjectivity and conceptualises autonomous individuals as making decisions situated within and dependent on particular social contexts (see Freeman 2011; Donchin 2001; Mackenzie and Stoljars 2000; Christman 1998; Friedman 1997) still rarely addresses the role of the body, the chapter also addresses the role of embodiment for perception and choice. It argues for the need to think-through what may be labelled as the autós of autonomy and, more precisely, the focus on one’s own, the same/sameness, oneself or one’s self that has come to characterise much autonomy discussions, via phenomenological philosophy.

    The chapter is divided into three parts. First, I make use of the phenomenological understanding of the intercorporeal self as being-in-the-world, in a discussion of how pain, fear or bodily symptoms of ESRD that unfolds in the shared space of child and parent can shape both of them in relation to each other (c.f. Käll 2013; Zeiler 2014a), feed into their bodily style of being-together, and help form parents’ perception of actions ‘within’ reach for them. Second, I shift the focus from the parent–child dyad to the larger semiotic–material context of haemodialysis and kidney transplantation in Sweden. This allows for an examination of embodied and enacted normativities, through an engagement with what Martin Gunnarson (2016: 128) has identified as a ‘dominant […] orientation towards transplantation’ in Sweden and Latvia. This second part also combines the discussion of an orientation towards transplantation with that of how norms about parenthood may be incorporated and excorporated into parents’ lived bodies,4 thereby making it possible to show why the no-choice theme in previous empirical work is understandable but more disconcerting than may first be assumed. Third, I argue that the acknowledgement of intercorporeal dimensions of bodily existence (argued for in Part I) and the role of orientation (argued for in Part II) demonstrates the need for a thinking-through of the autós of autonomous decision making, i.e. the understanding of the ‘ownness’ of this decision making, in ways other than those argued for in much of the bioethical autonomy and relational autonomy literature.

  • 375.
    Zeiler, Kristin
    et al.
    Uppsala University, The Swedish Collegium for Advanced Study in the Social Sciences (SCASSS).
    Malmquist, Anna
    Linkoping Univ, Dept Behav Sci & Learning, Linkoping, Sweden..
    Lesbian shared biological motherhood: the ethics of IVF with reception of oocytes from partner2014In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 17, no 3, p. 347-355Article in journal (Refereed)
    Abstract [en]

    In vitro fertilization (IVF) with reception of oocytes from partners (ROPA) allows lesbian mothers to share biological motherhood. The gestational mother receives an egg from her partner who becomes the genetic mother. This article examines the ethics of IVF with ROPA with a focus on the welfare of the woman and the resulting child, on whether ROPA qualifies as a "legitimate" medical therapy that falls within the goals of medicine, and on the meaning and value attributed to a biologically shared bond between parents and child. We also contrast IVF with ROPA with egg donor IVF for heterosexual couples and intrafamilial live uterus transplantation with IVF, and show how Swedish legislation makes certain ways of sharing biological bonds out of place. In Sweden, IVF with ROPA is illegal, egg donor IVF for heterosexual couples is allowed and practiced as is sperm donor IVF for lesbians, and live uterus transplantation is performed within a research project (though not allowed in regular health care). But is ROPA really ethically more problematic than these other cases? The article argues that IVF with ROPA gives rise to fewer ethical questions than does live uterus transplantation with IVF and, in some cases, egg donor IVF.

  • 376.
    Ågård, Anders
    et al.
    Sahlgrenska University Hospital, Sweden.
    Bremer, Anders
    University of Borås, Sweden.
    Sallin, Karl
    Uppsala University, Sweden.
    Engström, Ingemar
    Örebro University, Sweden.
    Ethical controversies in the process of formulating new national guidelines on cardiopulmonary resuscitation in Sweden2017In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 12, no 4, p. 174-179Article in journal (Refereed)
    Abstract [en]

    The Delegation for Medical Ethics within the Swedish Society of Medicine has taken the initiative to create national ethical guidelines on cardiopulmonary resuscitation. The reasons behind this initiative were indications of differences in the way decisions about cardiopulmonary resuscitation were made and documented and requests expressed by health- care professionals for new national ethical guidelines. During the process of creating the guidelines, a number of work- shops were held with representatives from the delegation and clinical experts from various branches of medicine. Several versions of the working document were sent to consultation bodies with requests for comments. We therefore believe that the final guidelines are well supported by the medical profession in Sweden. The purpose of this article is to present ethical issues on which it was difficult to reach consensus due to divergent opinions expressed by the people and organisations involved. The arguments for and against a particular point of view or wording in the text are presented. The main controversies were related to the following six issues; Determining whether or not cardiopulmonary resus- citation is beneficial for the patient – The presence of close loved ones during cardiopulmonary resuscitation – Performing cardiopulmonary resuscitation for the benefit of people other than the patient – Ambulance personnel’s mandate to decide not to initiate and to terminate cardiopulmonary resuscitation outside hospital – Limiting the length and content of cardiopulmonary resuscitation – Whether or not to specify a week of gestation before which cardio- pulmonary resuscitation should not be started. 

  • 377.
    Ågård, Anders
    et al.
    Sahlgrenska University Hospital.
    Bremer, Anders
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Sallin, Karl
    Uppsala University.
    Engström, Ingemar
    Örebro University.
    Ethical controversies when formulating new national guidelines on cardiopulmonary resuscitation in Sweden2017In: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101XArticle in journal (Refereed)
    Abstract [en]

    The Delegation for Medical Ethics within the Swedish Society of Medicine has taken the initiative to create national ethical guidelines on cardiopulmonary resuscitation. The reasons behind this initiative were indications of differences in the way decisions about cardiopulmonary resuscitation were made and documented and requests expressed by health- care professionals for new national ethical guidelines. During the process of creating the guidelines, a number of work- shops were held with representatives from the delegation and clinical experts from various branches of medicine. Several versions of the working document were sent to consultation bodies with requests for comments. We therefore believe that the final guidelines are well supported by the medical profession in Sweden. The purpose of this article is to present ethical issues on which it was difficult to reach consensus due to divergent opinions expressed by the people and organisations involved. The arguments for and against a particular point of view or wording in the text are presented. The main controversies were related to the following six issues; Determining whether or not cardiopulmonary resus- citation is beneficial for the patient – The presence of close loved ones during cardiopulmonary resuscitation – Performing cardiopulmonary resuscitation for the benefit of people other than the patient – Ambulance personnel’s mandate to decide not to initiate and to terminate cardiopulmonary resuscitation outside hospital – Limiting the length and content of cardiopulmonary resuscitation – Whether or not to specify a week of gestation before which cardio- pulmonary resuscitation should not be started. 

  • 378.
    Ågård, Anders
    et al.
    Sahlgrenska universitetssjukhuset, Göteborg.
    Engström, Ingemar
    Universitetssjukvårdens forskningscent­rum, Örebro.
    Sandén, Ulrika
    Umeå University, Faculty of Social Sciences, Department of Law.
    Erling, Valdemar
    Kungälvs sjukhus.
    Framtidens rond – ett personcentrerat och teambaserat möte med patienten: den traditionella ronden går inte att försvara etiskt eller juridiskt2017In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114, no 42Article in journal (Refereed)
  • 379. Åkerlund, Anna
    et al.
    Sundqvist, Martin
    Örebro University Hospital. Klinisk mikrobiologi, Laboratoriemedicinska Länskliniken, Örebro, Sweden.
    Hanberger, Håkan
    Åhrén, Christina
    Serrander, Lena
    Giske, Christian G.
    Svarstiderna kan kortas vid mikrobiologisk diagnostik av sepsis [Response times can be shortened in microbiological diagnosis of sepsis]: Bättre öppettider på laboratorier och aktiv rådgivning ger snabbare terapi [Better opening hours in laboratories and active advice enables faster therapy]2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id C73SArticle in journal (Refereed)
    Abstract [sv]

    Early and adequate antimicrobial therapy is lifesaving in patients with bloodstream infections (BSI). Continuous incubation and 24h availability of microbial pathogen identification in clinical microbiology laboratories shortens the time to report. To describe the current status in Swedish clinical microbiology laboratories, a web-based survey was performed. The survey showed major differences in availability both regarding laboratory opening hours and ability to incubate blood culture bottles outside working hours. It also showed differences in what was conveyed verbally to the clinician and in time to report of the bacterial species. Based on this survey, we debate how Swedish healthcare can improve the care of patients with BSI by offering a more rapid diagnostic process. This could be achieved through longer opening hours of the laboratory, better transport systems and blood culture cabinets positioned closer to the patient.

  • 380.
    Åström, Gunilla
    Umeå University, Faculty of Medicine, Department of Nursing.
    The meaning of caring as narrated, lived, moral experience1995Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The purpose of this research was to understand the meaning of caring as narrated, lived, moral experience. Forty-five good nurses experienced in the care of patients in surgical, medical and geriatric wards were interviewed. They described their experience of; caring, caring abilities, the worthwhile of caring, the strength related to caring and narrated situations (n=88) in which they had experienced that their caring had made a difference to the patient. Surgical nurses described care and cure as an integrated whole, medical nurses described care as integrated with the patients' social context and geriatric nurses described care as enhancing the autonomy of patients (I). The nurses' narrated, lived, experiences of caring situations revealed ways of intervening and interacting with the patient including caring actions (II).

    Eighteen good nurses experienced in the care of cancer patients were also interviewed. Their narrated, lived experiences of morally difficult care situations i.e. situations where it had been hard to know what was the right and good thing to do for the patient (n=60), revealed that relationships with their co-workers were very important for their possibility to act according to their moral reasoning and feelings(III). The situations for the nurses were either disclosed as overwhelming or possible to grasp. When narrating about these situations the nurses used different terms about themselves and their co-workers (One, They, I and We). The nurses viewed the patients either as a task to be accomplished or as a valuable unique person. In the latter situations ethical demands were interpreted, judged and acted upon (IV). Interpretations of these nurses' skills in managing morally difficult care situations disclosed two levels; one group of nurses who described positive paradigm cases, liberating maxims and disclosed open minds, while the other group described negative paradigm cases, restrictive maxims and revealed closed minds. The latter nurses were mostly the nurses who disclosed in Paper III that they used the term "one" about themselves and "they" about their co-workers (V).en patients recently cared for at surgical and medical wards were interviewed(IV). They narrated lived experiences of receiving/not receiving the help they needed or wanted when suffering from pain and anxiety/fear. The patients revealed that the most important thing for them to feel cared for in these situations was to be listened to, taken seriously and trusted, if they were not treated in this way the patients revealed that they felt they were in the hands of somebody who was uncaring.

    The findings are interpreted within the framework of Paul Tillich's philosophy concerning love, power, justice and courage, thereby showing the tension between these phenomena in the narrated, lived, moral experience. Light is also thrown on the dynamics of openness, vulnerability, fallibility, forgiveness, affirmation as well as powerlessness, meaninglessness, insufficiency, dissociation and exclusion. Reflections are made concerning practical wisdom.

  • 381.
    Joint Nordic Registers and Biobanks: A goldmine for health and welfare research2014Report (Other (popular science, discussion, etc.))
    Abstract [en]

    This report is based on the work of the NORIA-net on Registers and Biobanks (NRB), a Nordic working group of key actors involved in Nordic research and research policy at the national level. This NORIA-net has focused its activities on how to overcome existing obstacles that impede Nordic data sharing and has proposed ways of enhancing coordination to strengthen Nordic register-based research.

    Register-based research within the field of health and wellbeing has great potential for producing knowledge that can be used to improve the capacity of the Nordic welfare states.

    Nordic register-based research has the potential to attract international interest and to enable the Nordic research community to take the international lead in this field.

  • 382.
    Legislation on biotechnology in the Nordic countries: – an overview 20162016Other (Other (popular science, discussion, etc.))
    Abstract [en]

    The current report is an update of the reports on Legislation onbiotechnology in the Nordic countries published in 2014 and 2015. Given the clear need for such overviews, the Nordic Committee on Bioethics decided to update the tables to reflect recent legal amendments. The aim of this report is to give the reader information on the current status in the different countries and a chance to compare the legal situation.

    Sixteen important areas of biotechnology have been chosen for this overview:

    • Assisted reproduction
    • Preimplantation genetic diagnosis (PGD)
    • Preimplantation genetic screening (PGS)
    • Abortion• Prenatal Diagnosis and/or screening
    • Organ and tissue transplantation
    • Embryo research
    • Cloning
    • Clinical research on humans
    • Human biobanks
    • Ethical committees
    • Genetic testing
    • Advanced therapy medicinal products
    • Genetically modified organisms
    • Animal experimentation
    • Legal status of Council of Europe Biomedicine Conventionand its additional protocols
  • 383.
    Legislation on biotechnology in the Nordic countries: – an overview 20172017Other (Other (popular science, discussion, etc.))
    Abstract [en]

    The current report is an update of the reports on Legislation on biotechnology in the Nordic countries published annually since 2014. Given the clear need for such overviews, the Nordic Committee on Bioethics decided to update the tables to reflect recent legal amendments. The aim of this report is to give the reader information on the current status in the different countries and a chance to compare the legal situation.

    Sixteen important areas of biotechnology have been chosen for this overview:

    • Assisted reproduction
    • Preimplantation genetic diagnosis (PGD)
    • Preimplantation genetic screening (PGS)
    • Abortion
    • Prenatal Diagnosis and/or screening
    • Organ and tissue transplantation
    • Embryo research
    • Cloning
    • Clinical research on humans
    • Human biobanks
    • Ethical committees
    • Genetic testing
    • Advanced therapy medicinal products
    • Genetically modified organisms
    • Animal experimentation
    • Legal status of Council of Europe Biomedicine Convention and its additional protocols
  • 384.
    Farisco, Michele (Editor)
    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 (Editor)
    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 and Direct Brain Communication: New insights and responsibilities concerning speechless but communicative subjects2016Book (Refereed)
    Abstract [en]

    Neurotechnology and Direct Brain Communication focuses on recent neuroscientific investigations of infant brains and of patients with disorders of consciousness (DOC), both of which are at the forefront of contemporary neuroscience. The prospective use of neurotechnology to access mental states in these subjects, including neuroimag- ing, brain simulation, and brain computer interfaces, offers new opportunities for clinicians and researchers, but has also received specific attention from philosophi- cal, scientific, ethical, and legal points of view. This book offers the first systematic assessment of these issues, investigating the tools neurotechnology offers to care for verbally non-communicative subjects and suggesting a multidisciplinary approach to the ethical and legal implications of ordinary and experimental practices.

    The book is divided into three parts: the first and second focus on the scientific and clinical implications of neurological tools for DOC patient and infant care. With refer- ence to these developments, the third and final part presents the case for re-evaluating classical ethical and legal concepts, such as authority, informed consent, and privacy.

    Neurotechnology and Direct Brain Communication will appeal to researchers and postgraduate students in the fields of cognitive science, medical ethics, medical technology, and the philosophy of the mind. With implications for patient care, it will also be a useful resource for clinicians, medical centres, and health practitioners. 

  • 385.
    Palmgren, Juni (Editor)
    Karolinska Institutet.
    Nordic biobanks and registers: A basis for innovative research on health and welfare2017Report (Other (popular science, discussion, etc.))
    Abstract [en]

    The report describes a knowledge base for cross-border development of research that uses Nordic registers, biobanks and clinical studies, and offers suggestions for policy implications. Separate reports are provided on the Nordic Trial Alliance (NTA), the Nordic eScience Action Plan 2.0 and Open Access to research data from a Nordic perspective.

    This report focuses on registers and biobanks as research infrastructures for innovative research on health and welfare. The Nordic countries have very similar and unique healthcare and welfare systems. The personal identification number (PIN) for each citizen makes it possible to carry out longitudinal research and research based on a combination of health registers (e.g. healthcare data, biobanks, register on the prevalence of different diseases and causes of death) and social registers (e.g. education, employment, migration, gender representation in democratic decision-making). In contrast to the rest of the world, the Nordic countries have very long time series at the population level, considered to be a unique “goldmine” for research. The proposed longitudinal data infrastructure is particularly well suited to studying changes in the Nordic welfare model over time and for setting up a unique basis for personalised medicine/precision medicine that could guide medical practice in real time, including social and behavioural aspects.

5678 351 - 385 of 385
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