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  • 51.
    Nordenfelt, Lennart
    Linköpings universitet, Institutionen för medicin och hälsa, Hälsa och samhälle. Linköpings universitet, Filosofiska fakulteten.
    Der Gegensatz zwischen naturalistischen und holistischen Theorien von Gesundheit und Krankheit2012Ingår i: Das Gesunde, das Kranke und die Medizinethik: Moralische Implikationen des Krankheitsbegriffs / [ed] Markus Rothhaar & Andreas Frewer, Stuttgart: Franz Steiner Verlag, 2012, 1, s. 89-104Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 52.
    Nordenfelt, Lennart
    Linköpings universitet, Institutionen för medicin och hälsa, Hälsa och samhälle. Linköpings universitet, Filosofiska fakulteten.
    The opposition between naturalistic and holistic theories of health and disease2013Ingår i: Health, illness and disease: philosophical essays / [ed] Havi Carel and Rachel Cooper, Durham UK: Acumen Publishing, 2013, 1, s. 23-36Kapitel i bok, del av antologi (Övrigt vetenskapligt)
    Abstract [en]

    What counts as health or ill health? How do we deal with the fallibility of our own bodies? Should illness and disease be considered simply in biological terms, or should considerations of its emotional impact dictate our treatment of it?  Our understanding of health and illness had become increasingly more complex in the modern world, as we are able to use medicine not only to fight disease but to control other aspects of our bodies, whether mood, blood pressure, or cholesterol. This collection of essays foregrounds the concepts of health and illness and patient experience within the philosophy of medicine, reflecting on the relationship between the ill person and society. Mental illness is considered alongside physical disease, and the important ramifications of society's differentiation between the two are brought to light. Health, Illness and Disease is a significant contribution to shaping the parameters of the evolving field of philosophy of medicine and will be of interest to medical practitioners and policy-makers as well as philosophers of science and ethicists.

  • 53. Nordenskjöld, U
    et al.
    Thyberg, Ingrid
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för inflammationsmedicin. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Hjärt- och Medicincentrum, Reumatologiska kliniken i Östergötland.
    Arbetsterapi vid reumatisk sjukdom 2011Ingår i: Reumatologi / [ed] Lars Klareskog, Tore Saxne, Yvonne Enman, 2011, 2, s. 423-Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 54.
    Nordgren, Anders
    Linköpings universitet, Institutionen för kultur och kommunikation, Avdelningen för kulturvetenskaper, KVA. Linköpings universitet, Filosofiska fakulteten.
    First-in-human trials on genome editing: Strategies for handling uncertainty about benefit and uncertainty about harm2017Konferensbidrag (Refereegranskat)
    Abstract [en]

    Human genome editing can be carried out on somatic cells as well as on the germline. In this paper I discuss first-in-human trials on both types of editing. At first sight, risk and risk/benefit assessment might seem to be key issues in such trials. However, according to decision theory, risk presupposes numerical values. In ‘decision-making under risk’, decisionmakers have sufficient information to assign probabilities to alternative outcomes. This is not the case in first-in-human trials. These trials are rather characterized by ‘decision-making under uncertainty’. My overall objective is to clarify the implications of uncertainty about benefit and uncertainty about harm in first-in-human trials on genome editing. A special aim is to analyse strategies for handling uncertainty.

  • 55.
    Pergert, Pernilla
    et al.
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Bartholdson, Cecilia
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Wenemark, Marika
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för samhällsmedicin. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för verksamhetsstöd och utveckling, Verksamhetsutveckling vård och hälsa.
    Lutzen, Kim
    Karolinska Inst, Sweden.
    af Sandeberg, Margareta
    Karolinska Inst, Sweden; Karolinska Univ Hosp, Sweden.
    Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments2018Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, artikel-id 35Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. Methods: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from almost never true to almost always true; while the Swedish HECS labels range from never to always. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. Results: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected never and always. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word respect was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients wishes implied always complying with them. Conclusions: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.

  • 56.
    Pestoff, Rebecka
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för cellbiologi. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Diagnostikcentrum, Klinisk genetik.
    Johansson, Peter
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i östra Östergötland, Medicinkliniken ViN.
    Nilsen, Per
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för samhällsmedicin. Linköpings universitet, Medicinska fakulteten.
    Gunnarsson, Cecilia
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för cellbiologi. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Diagnostikcentrum, Klinisk genetik.
    Factors influencing use of telegenetic counseling: perceptions of health care professionals in Sweden2019Ingår i: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 10, nr 3, s. 407-415Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Genetic counseling services are increasing in demand and limited in access due to barriers such as lack of professional genetic counselors, vast geographic distances, and physical hurdles. This research focuses on an alternative mode of delivery for genetic counseling in Sweden, in order to overcome some of the mentioned barriers. The aim of this study is to identify factors that influence the implementation and use of telegenetic counseling in clinical practice, according to health care professionals in Southeast Sweden. Telegenetic counseling refers to the use of video-conferencing as a means to provide genetic counseling. Qualitative, semi-structured interviews with 16 genetic counseling providers took place and phenomenographic analysis was applied. Significant excerpts were identified in each transcript, which led to sub-categories that constructed the main findings. Three categories emerged from the data: (1) requirements for optimal use, (2) impact on clinical practice, and (3) patient benefits. Each category consists of two or three sub-categories, in total seven sub-categories. These findings could potentially be used to improve access and uptake of telegenetic counseling in Sweden and in other countries with a similar health care system. This could benefit not only remote patient populations, as described in previous research, but also large family groups and patients experiencing obstacles in accessing genetic counseling, such as those with a psychiatric illness or time constraints, and be a useful way to make genetic counseling available in the new era of genomics.

  • 57.
    Petersson, Bo
    Linköpings universitet, Institutionen för kultur och kommunikation. Linköpings universitet, Filosofiska fakulteten.
    Platon2012Ingår i: Filosofi och medicin: från Platon till Foucault, Stockholm: Thales, 2012, s. 17-37Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 58.
    Petersson, Bo
    et al.
    Linköpings universitet, Institutionen för kultur- och samhällsvetenskap. Linköpings universitet, Filosofiska fakulteten.
    Ludvigsson, Johnny
    Linköpings universitet, Institutionen för molekylär och klinisk medicin. Linköpings universitet, Hälsouniversitetet.
    När kan man forska på patienter utan deras informerade samtycke?1996Ingår i: VEST. Tidskrift för vetenskapsstudier, ISSN 0283-6025, nr 4, s. 47-56Artikel i tidskrift (Övrigt vetenskapligt)
  • 59.
    Piltén, Carina
    et al.
    Intensive Care Unit, Capio S:t Gorans Hospital, Stockholm.
    Eldh, Ann Catrine
    Intensive Care Unit, Capio S:t Gorans Hospital, Stockholm.
    Lung recruitment--a nurse and/or physician task. A national survey on requirements for education, regulations and guidelines.2009Ingår i: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 25, nr 1, s. 4-9Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    International and national guidelines on requirements for performing lung recruitment manoeuvres are lacking. This paper presents a nationwide descriptive survey of the occurrence of and conditions for lung recruitment in adult patients treated with mechanical ventilation in intensive care units (ICUs) in Sweden. All ICUs except neurological, cardiac, paediatric and neonatal ICUs were invited (N=73); of these, 60 ICUs participated in the study (82%). The main outcome measures were prevalence of lung recruitment, whether ICU nurses and/or physicians carried out lung recruitment, requirements for nurses to perform lung recruitment and the existence of local guidelines. Lung recruitment was performed at 92% of the ICUs. Only physicians performed lung recruitment at 27 ICUs (49%), and in 28 units (51%) both physicians and nurses performed this treatment. Lung recruitment was performed more often in units where both physicians and nurses performed lung recruitment than in units where only physicians performed the manoeuvres (46% vs. 12%, p=0.03). Further, local guidelines on lung recruitment manoeuvres were more common in units where both physicians and nurses performed this treatment (71% vs. 41%, p=0.02). The results suggest that recommendations of repeated and prompt lung recruitment manoeuvres are better met if nurses, along with physicians, perform lung recruitment.

  • 60.
    Sandman, Lars
    Högskolan i Borås, Sweden.
    Den palliativa vårdens etik2016Ingår i: Palliativ vård ur ett tvärprofessionellt perspektiv / [ed] Inger Benkel, Ulla Molander, Helle Wijk, Liber, 2016, s. 141-166Kapitel i bok, del av antologi (Övrig (populärvetenskap, debatt, mm))
  • 61.
    Sandman, Lars
    Högskolan i Borås, Sweden.
    Invited commentary to the discussion paper Ethics dilemmas of early detection of obesity2016Ingår i: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 44, nr 6, s. 546-548Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [en]

    n/a

  • 62.
    Sandman, Lars
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten. University of Borås, Sweden.
    Gustavsson, Erik
    Linköpings universitet, Institutionen för kultur och kommunikation, Avdelningen för kulturvetenskaper, KVA. Linköpings universitet, Filosofiska fakulteten.
    Beyond the Black Box Approach to Ethics! Comment on "Expanded HTA: Enhancing Fairness and Legitimacy".2016Ingår i: International Journal of Health Policy and Management, ISSN 2322-5939, E-ISSN 2322-5939, Vol. 5, nr 6, s. 393-394Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In the editorial published in this journal, Daniels and colleagues argue that his and Sabin's accountability for reasonableness (A4R) framework should be used to handle ethical issues in the health technology assessment (HTA)-process, especially concerning fairness. In contrast to this suggestion, it is argued that such an approach risks suffering from the irrrelevance or insufficiency they warn against. This is for a number of reasons: lack of comprehensiveness, lack of guidance for how to assess ethical issues within the "black box" of A4R as to issues covered, competence and legitimate arguments and finally seemingly accepting consensus as the final verdict on ethical issues. We argue that the HTA community is already in a position to move beyond this black box approach.

  • 63.
    Sandman, Lars
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Liliemark, Jan
    Linköpings universitet.
    Withholding and withdrawing treatment for cost-effectiveness reasons: Are they ethically on par?2019Ingår i: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 33, nr 2, s. 278-286Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In healthcare priority settings, early access to treatment before reimbursement decisions gives rise to problems of whether negative decisions for cost-effectiveness reasons should result in withdrawing treatment, already accessed by patients. Among professionals there seems to be a strong attitude to distinguish between withdrawing and withholding treatment, viewing the former as ethically worse. In this article the distinction between withdrawing and withholding treatment for reasons of cost effectiveness is explored by analysing the doing/allowing distinction, different theories of justice, consequentialist and virtue perspectives. The authors do not find any strong reasons for an intrinsic difference, but do find some reasons for a consequentialist difference, given present attitudes. However, overall, such a difference does not, all things considered, provide a convincing reason against withdrawal, given the greater consequentialist gain of using cost-effective treatment. As a result, patients should be properly informed when given early access to treatment, that such treatment can be later withdrawn following a negative reimbursement decision.

  • 64.
    Scott, Anna Mae
    et al.
    The Dartmouth Institute for Health Policy & Clinical Practice, USA.
    Bond, Kenneth
    Canadian Agency for Drugs and Technologies in Health (CADTH).
    Gutierrez-Ibarluzea, Inaki
    Servicio de Evaluación de Tecnologías Sanitarias (OSTEBA).
    Hofmann, Björn
    University College of Gjovik, Norway.
    Sandman, Lars
    School of Health Sciences, University of Borås, Sweden.
    QUALITY ASSESSMENT OF ETHICS ANALYSES FOR HEALTH TECHNOLOGY ASSSESSMENT2016Ingår i: International Journal of Technology Assessment in Health Care, ISSN 0266-4623, E-ISSN 1471-6348, Vol. 32, nr 5, s. 362-369Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives: Although consideration of ethical issues is recognized as a crucial part of health technology assessment, ethics analysis for HTA is generally perceived as methodologically underdeveloped in comparison to other HTA domains. The aim of our study is (i) to verify existing tools for quality assessment of ethics analyses for HTA, (ii) to consider some arguments for and against the need for quality assessment tools for ethics analyses for HTA, and (iii) to propose a preliminary set of criteria that could be used for assessing the quality of ethics analyses for HTA.

    Methods: We systematically reviewed the literature, reviewed HTA organizations’ Web sites, and solicited views from thirty-two experts in the field of ethics for HTA.

    Results: The database and HTA agency Web site searches yielded 420 references (413 from databases, seven from HTA Web sites). No formal instruments for assessing the quality of ethics analyses for HTA purposes were identified. Thirty-two experts in the field of ethics for HTA from ten countries, who were brought together at two workshops held in Edmonton (Canada) and Cologne (Germany) confirmed the findings from the literature.

    Conclusions: Generating a quality assessment tool for ethics analyses in HTA would confer considerable benefits, including methodological alignment with other areas of HTA, increase in transparency and transferability of ethics analyses, and provision of common language between the various participants in the HTA process. We propose key characteristics of quality assessment tools for this purpose, which can be applied to ethics analyses for HTA purposes.

  • 65.
    Thyberg, Ingrid
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för inflammationsmedicin. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Hjärt- och Medicincentrum, Reumatologiska kliniken i Östergötland.
    Opava, C
    Rehabilitering vid reumatisk sjukdom2011Ingår i: Reumatologi / [ed] Lars Klareskog, Tore Saxne, Yvonne Enman, 2011, 2, s. 423-Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 66.
    Tinghög, Gustav
    Linköpings universitet, Institutionen för ekonomisk och industriell utveckling, Nationalekonomi. Linköpings universitet, Filosofiska fakulteten. Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Hälsouniversitetet.
    Discounting, Preferences, and Paternalism in Cost-Effectiveness Analysis2012Ingår i: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 20, nr 3, s. 297-318Artikel i tidskrift (Refereegranskat)
    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.

  • 67.
    Welin, Stellan
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Donationsutredningen öppnar för nya organdonatorer: Kräver reflexion om människovärdesprincipen och samtycke2017Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114Artikel i tidskrift (Refereegranskat)
    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.

  • 68.
    Wijma, Barbro
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för barns och kvinnors hälsa. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Barn- och kvinnocentrum, Kvinnokliniken i Linköping.
    Persson, Alma
    Linköpings universitet, Institutionen för tema, Tema Genus. Linköpings universitet, Filosofiska fakulteten.
    Ockander, Marlene
    Jönköping Academy for Improvement of Health and Welfare, Jönköping University.
    Brüggemann, Jelmer
    Linköpings universitet, Institutionen för tema, Tema teknik och social förändring. Linköpings universitet, Filosofiska fakulteten.
    Kränkningar i vården är vanligt förekommande: Viktigt med aktivt arbete mot att patienter kränks2019Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, s. 1-6Artikel i tidskrift (Övrigt vetenskapligt)
    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.

  • 69.
    Wiss, Johanna
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Healthcare Priority Setting and Rare Diseases: What Matters When Reimbursing Orphan Drugs2017Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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.

    Delarbeten
    1. Prioritizing Rare Diseases: Psychological Effects Influencing Medical Decision Making
    Öppna denna publikation i ny flik eller fönster >>Prioritizing Rare Diseases: Psychological Effects Influencing Medical Decision Making
    2017 (Engelska)Ingår i: Medical decision making, ISSN 0272-989X, E-ISSN 1552-681XArtikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    Background. Measuring societal preferences for rarity has been proposed to determine whether paying pre- mium prices for orphan drugs is acceptable. Objective. To investigate societal preferences for rarity and how psychological factors affect such preferences. Method. A postal survey containing resource allocation dilemmas involving patients with a rare disease and patients with a common disease, equal in severity, was sent out to a randomly selected sample of the population in Sweden (return rate 42.3%, n = 1270). Results. Overall, we found no evidence of a general preference for prioritizing treat- ment of patients with rare disease patients over those with common diseases. When treatment costs were equal, most respondents (42.7%) were indifferent between the choice options. Preferences for prioritizing patients with common diseases over those with rare diseases were more frequently displayed (33.3% v. 23.9%). This tendency was, as expected, amplified when the rare disease was costlier to treat. The share of respondents choosing to treat patients with rare diseases increased when present- ing the patients in need of treatment in relative rather than absolute terms (proportion dominance). Surprisingly, identifiability did not increase preferences for rarity. Instead, identifying the patient with a rare disease made respondents more willing to prioritize the patients with common diseases. Respondents’ levels of education were significantly associated with choice—the lower the level of education, the more likely they were to choose the rare option. Conclusions. We find no support for the existence of a general preference for rarity when setting health care priorities. Psychological effects, especially proportion dominance, are likely to play an important role when pre- ferences for rarity are expressed.  

    Ort, förlag, år, upplaga, sidor
    Sage Publications, 2017
    Nyckelord
    orphan drugs; rare diseases; priority setting; societal preferences; survey; resource allocation; proportion dominance; identifiability.
    Nationell ämneskategori
    Nationalekonomi Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi Psykologi (exklusive tillämpad psykologi)
    Identifikatorer
    urn:nbn:se:liu:diva-134647 (URN)10.1177/0272989X17691744 (DOI)000403060600008 ()
    Forskningsfinansiär
    Ragnar Söderbergs stiftelseMarianne och Marcus Wallenbergs Stiftelse
    Anmärkning

    Funding agencies: Swedish Association of the Pharmaceutical Industry (LIF); Ragnar Soderberg Foundation

    Tillgänglig från: 2017-02-21 Skapad: 2017-02-21 Senast uppdaterad: 2018-04-09Bibliografiskt granskad
    2. The influence of identifiability and singularity in moral decision making
    Öppna denna publikation i ny flik eller fönster >>The influence of identifiability and singularity in moral decision making
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    2015 (Engelska)Ingår i: Judgment and decision making, ISSN 1930-2975, E-ISSN 1930-2975, Vol. 10, nr 5, s. 492-502Artikel i tidskrift (Refereegranskat) Published
    Abstract [en]

    There is an increased willingness to help identified individuals rather than non-identified, and the effect of identifiability is mainly present when a single individual rather than a group is presented. However, identifiability and singularity effects have thus far not been manipulated orthogonally. The present research uses a joint evaluation approach to examine the relative contribution of identifiability and singularity in moral decision-making reflecting conflicting values between deontology and consequentialism. As in trolley dilemmas subjects could either choose to stay with the default option, i.e., giving a potentially life-saving vaccine to a single child, or to actively choose to deny the single child the vaccine in favor of five other children. Identifiability of the single child and the group of children was varied between-subjects in a 2x2 factorial design. In total 1,232 subjects from Sweden and the United States participated in three separate experiments. Across all treatments, in all three experiments, 32.6% of the subjects chose to stay with the deontological default option instead of actively choosing to maximize benefits. Results show that identifiability does not always have a positive effect on decisions in allocation dilemmas. For single targets, identifiability had a negative or no effect in two out of three experiments, while for the group of targets identifiability had a more stable positive effect on subjects’ willingness to allocate vaccines. When the effect of identifiability was negative, process data showed that this effect was mediated by emotional reactance. Hence, the results show that the influence of identifiability is more complex than it has been previously portrayed in the literature on charitable giving. 

    Nyckelord
    identifiable victim effect, singularity effect, resource allocation, trolley dilemma, moral judgment, decision making, charitable giving
    Nationell ämneskategori
    Tillämpad psykologi
    Identifikatorer
    urn:nbn:se:liu:diva-122128 (URN)000362067700009 ()
    Anmärkning

    Funding text: Ragnar Soderberg Foundation; U.S. National Science Foundation [SES-1227729, SES-1427414]

    Tillgänglig från: 2015-10-19 Skapad: 2015-10-19 Senast uppdaterad: 2017-12-01Bibliografiskt granskad
  • 70.
    Yuksekdag, Yusuf
    Linköpings universitet, Institutionen för kultur och kommunikation, Centrum för tillämpad etik. Linköpings universitet, Filosofiska fakulteten.
    Against Cursory Treatments in Ethics of Medical Migration from Underserved Countries2017Ingår i: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 14, nr 2, s. 173-176Artikel i tidskrift (Refereegranskat)
    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.

  • 71.
    Yuksekdag, Yusuf
    Linköpings universitet, Institutionen för kultur och kommunikation, Centrum för tillämpad etik. Linköpings universitet, Filosofiska fakulteten.
    Health Without Care? Vulnerability, Medical Brain Drain, and Health Worker Responsibilities in Underserved Contexts2018Ingår i: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 26, nr 1, s. 17-32Artikel i tidskrift (Refereegranskat)
    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.

  • 72.
    Yuksekdag, Yusuf
    Linköpings universitet, Filosofiska fakulteten. Linköpings universitet, Institutionen för kultur och kommunikation, Centrum för tillämpad etik. University of Bern, Switzerland.
    The Right to Exit and Skilled Labour Emigration: Ethical Considerations for Compulsory Health Service Programmes2019Ingår i: Developing World Bioethics, ISSN 1471-8731, E-ISSN 1471-8847, Vol. 19, nr 3, s. 169-179Artikel i tidskrift (Refereegranskat)
    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.

  • 73.
    Zbikowski, Anke
    et al.
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Medicinska fakulteten. Department for Obstetrics and Gynecology, Ryhov County Hospital, Jönköping, Sweden .
    Zeiler, Kristin
    Linköpings universitet, Institutionen för tema, Tema teknik och social förändring. Linköpings universitet, Filosofiska fakulteten.
    Swahnberg, Katarina
    Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för kliniska vetenskaper. Linköpings universitet, Medicinska fakulteten. 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 staff2016Ingår i: Clinical Ethics, ISSN 1477-7509, E-ISSN 1758-101X, Vol. 11, nr 1, s. 9-18Artikel i tidskrift (Refereegranskat)
    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.

  • 74.
    Zeiler, Kristin
    Linköpings universitet, Institutionen för tema, Tema teknik och social förändring. Linköpings universitet, Filosofiska fakulteten.
    On the Autós of Autonomous Decision Making: Intercorporeality, Temporality, and Enacted Normativities in Transplantation Medicine2018Ingår i: Existential Medicine: Essays on Health and Illness / [ed] Kevin Aho, London and New York: Rowman & Littlefield International, 2018, s. 81-100Kapitel i bok, del av antologi (Refereegranskat)
    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.

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