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  • 201.
    MacGregor, Oskar
    et al.
    Swansea University, UK.
    McNamee, Mike
    Swansea University, UK.
    Philosophy on steroids: A reply2010In: Theoretical Medicine and Bioethics, ISSN 1386-7415, E-ISSN 1573-0980, Vol. 31, no 6, p. 401-10Article in journal (Refereed)
    Abstract [en]

    Brent Kious has recently attacked several arguments generally adduced to support anti-doping in sports, which are widely supported by the sports medicine fraternity, international sports federations, and international governments. We show that his attack does not succeed for a variety of reasons. First, it uses an overly inclusive definition of doping at odds with the WADA definition, which has global, if somewhat contentious, currency. Second, it seriously misconstrues the position it attacks, rendering the attack without force against a more balanced construal of an anti-doping position. Third, it makes unwarranted appeals to matters Kious considers morally 'clear', while simultaneously attacking a position many others take to be equally morally 'clear', namely that of anti-doping. Such an inconsistency, attacking and appealing to the moral status quo as befits one's argument, is not acceptable without further qualification. Fourth, his position suffers from a general methodological flaw of over-reliance upon argumentation by analogy. Moreover, it is argued that the analogies, being poorly selected and developed, fail to justify his conclusion that the anti-doping lobby lacks philosophical and moral authority for its stance. These issues are symptomatic of a more fundamental problem: any attempt at providing a blanket solution to the question of whether doping is morally acceptable or not is bound to run up against problems when applied to highly specific contexts. Thus, rather than reaching any particular conclusion for or against doping products or processes in this article, we conclude that an increased context-sensitivity will result in a more evenhanded appraisal of arguments on the matter.

  • 202.
    Malmgren, William
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.
    Parfalk, Simon
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.
    Att som smärtpatient möta sjukvårdspersonal2014Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Pain is the discomfort that the individual is experiencing to be outside the level of pain that he or she is experiencing as tolerable. The pain is usually referred to as either chronic or acute. Acute pain is termed as short-lived transient, it becomes a chronic pain when it lasts past three months. The pain arises out of a direct or indirect damage that is registered out of nociceptive pain receptors. In cases where the pain's origin is unknown is referred to as idiopathic pain. The pain causes in addition to emotional suffering also an impact on the individual's physical and social interactions, and untreated pain can result to medical complications. The meeting is a unique nursing interaction where the parties' understanding and trust for each other affects how patients experience their pain. This effect leads to an increased or reduced suffering for the unique individual. The purpose of this study was to describe how people with pain experience meeting with the nurse. The method was a literature review with systematic searches where medical care databases were searched. The result is based on fourteen qualitative articles. Three main categories and nine subcategories emerged after the analysis. The result includes how the patient experiences the nurse managing the pain. The conclusion is made that it is required by health care professionals to meet the needs of the patient and to see him as unique. Pain treatment must be tailored to the individual needs more in order to ensure that care is of high quality. Which includes an area in which improvements can always be made.

  • 203.
    Malmqvist, Erik
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    A further lesson from existing kidney markets2014In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 14, no 10, p. 27-29Article in journal (Refereed)
    Abstract [en]

    The target article challenges the increasingly popular portrayal of living kidney sale as potentially a mutually beneficial arrangement, capable not only of saving or improving the lives of patients in need of transplants but also of significantly benefiting poor vendors. Carefully reviewing the literature on harms to vendors in illegal kidney markets and in Iran’s legal market, Koplin (2014) argues that many of these harms would persist in the sort of legal regulated system that kidney sale advocates envision. This is an important argument. The kidney sales debate has been skewed in favor of permitting sales by a simplified view of the potential harms involved and excessive optimism about the capacity of regulation to prevent these harms (Malmqvist 2013). The article counterbalances these tendencies and thus considerably weakens the case for allowing sales. Nonetheless, some market proponents might remain unconvinced. I shall suggest that in addition to the lessons that Koplin draws from existing kidney markets, there is yet another one, which casts further doubt on the advisability of allowing kidney sales.

  • 204.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Back to the future: Habermas's "The Future of Human Nature"2007In: The Hastings center report, ISSN 0093-0334, E-ISSN 1552-146X, Vol. 37, no 2, p. 4-5Article in journal (Other (popular science, discussion, etc.))
  • 205.
    Malmqvist, Erik
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Cooper, M. and Waldby, C. Clinical Labour: Tissue Donors and Research Subjects in the Global Bioeconomy (Durham: Duke UP, 2014)2014In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 17, no 4, p. 651-652Article, book review (Other academic)
  • 206.
    Malmqvist, Erik
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Does the ethical appropriateness of paying donors depend on what body parts they donate?2016In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 19, no 3, p. 463-473Article in journal (Refereed)
    Abstract [en]

    The idea of paying donors in order to make more human bodily material available for therapy, assisted reproduction, and biomedical research is notoriously controversial. However, while national and international donation policies largely oppose financial incentives they do not treat all parts of the body equally: incentives are allowed in connection to the provision of some parts but not others. Taking off from this observation, I discuss whether body parts differ as regards the ethical legitimacy of incentives and, if so, why. I distinguish two approaches to this issue. On a ”principled” approach, some but not all body  parts are inherently special in a way that proscribes payment. On a ”pragmatic” approach, the appropriateness of payment in relation to a specific part must be determined through an overall assessment of e.g. the implications of payment for the health and welfare of providers, recipients, and third parties, and the quality of providers’ consent. I argue that the first approach raises deep and potentially divisive questions about the good life, whereas the second approach invokes currently unsupported empirical assumptions and requires difficult  balancing between different values and the interests of different people. This does not mean that any attempt to distinguish between body parts in regard to the appropriateness of payment necessarily fails. However, I conclude, any plausible such attempt should either articulate and defend a specific view of the good life, or gather relevant empirical evidence and apply defensible principles for weighing goods and interests.

  • 207.
    Malmqvist, Erik
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    International clinical research and the problem of benefiting from injustice2014Conference paper (Refereed)
  • 208.
    Malmqvist, Erik
    Linköping University, Department of Culture and Communication, Culture and Aesthetics. Linköping University, Faculty of Arts and Sciences.
    Jordens fattiga som forskningsresurs2017In: Tidskrift för politisk filosofi, ISSN 1402-2710, Vol. 21, no 3, p. 16-28Article in journal (Refereed)
    Abstract [sv]

    Denna artikel diskuterar de etiska frågor som den ökande flytten av klinisk forskning till låg- och medelinkomstländer väcker. Debatten kring detta fenomen har fokuserat på problem kring risker, samtycke och exploatering. Jag argumenterar för att dessa problem inte är specifika för forskning i dessa länder utan snarare bör ses som generella forskningsetiska utmaningar. Jag försöker också visa att det finns ett annat problem som är specifikt för just denna forskning. Det är ofta fattigdom och otillräcklig tillgång till sjukvård som motiverar forskningspersoner i låg- och medelinkomstländer att delta. När forskare och läkemedelsbolag drar nytta av dessa moraliskt oacceptabla bakgrundsvillkor skapar de också incitament att bevara dem. Jag skisserar avslutningsvis några praktiska konsekvenser av detta resonemang.

  • 209.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Kidney sales and the analogy with dangerous employment2015In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 23, no 2, p. 107-121Article in journal (Refereed)
    Abstract [en]

    Proponents of permitting living kidney sales often argue as follows. Many jobs involve significant risks; people are and should be free to take these risks in exchange for money; the risks involved in giving up a kidney are no greater than the risks involved in acceptable hazardous jobs; so people should be free to give up a kidney for money, too. This paper examines this frequently invoked but rarely analysed analogy. Two objections are raised. First, it is far from clear that kidney sales and dangerous jobs involve comparable risks on an appropriately broad comparison. Second, and more importantly, even if they do involve comparable risks it does not follow that kidney sales must be permitted because dangerous jobs are. The analogy assumes that kidney sales are banned for paternalistic reasons. But there may be other, non-paternalistic reasons for the ban. And paternalists, too, can consistently defend the ban even if kidney sales are no riskier than occupations that they find acceptable. Soft paternalists may want to protect would-be vendors from harms that they have not voluntarily chosen. Egalitarian hard paternalists may want to protect already badly off vendors from further worsening their situation. For neither species of paternalist is the size of the risk prevented decisive. I conclude that the analogy with dangerous jobs, while rhetorically powerful, pulls little real argumentative weight. Future debates on living kidney sales should therefore proceed without it.

  • 210.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Misunderstanding, continued2012In: IRB: Ethics and Human Research, ISSN 0193-7758, Vol. 34, no 2, p. 19-19Article in journal (Other (popular science, discussion, etc.))
  • 211.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    (Mis)Understanding Exploitation2011In: IRB: Ethics and Human Research, ISSN 0193-7758, Vol. 33, no 2, p. 1-5Article in journal (Refereed)
    Abstract [en]

    The term exploitation is notoriously hard to define. Yet it is frequently invoked to frame moral concerns about clinical research. Recently, a group of influential authors have proposed a so-called “non-exploitation framework” for the ethics of randomized controlled trials that appears to address these concerns. In this paper, I challenge one basic assumption of that framework: the idea that non-exploitation in research requires participants to be protected from excessive risks, understood as risks that are not outweighed by the benefits that the research is expected to lead to. Drawing on examples of exploitation in other contexts, I show that this idea has highly counterintuitive implications. I conclude that the non-exploitation framework obscures concerns about exploitation in biomedical research rather than clarifying them.   

  • 212.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Phenomenology, cosmetic surgery, and complicity2014In: Feminist phenomenology and medicine / [ed] Kristin Zeiler & Lisa Folkmarson Käll, Albany: State University of New York, 2014, p. 81-99Chapter in book (Other academic)
  • 213.
    Malmqvist, Erik
    Linköping University, Department of Culture and Communication, Culture and Aesthetics. Linköping University, Faculty of Arts and Sciences.
    Replik till Marcus Agnafors: "En rimlig samvetsklausul"2017In: Tidskrift för politisk filosofi, ISSN 1402-2710, no 2, p. 33-38Article in journal (Other academic)
  • 214.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
    Reproductive choice, enhancement, and the moral continuum argument2014In: Journal of Medicine and Philosophy, ISSN 0360-5310, E-ISSN 1744-5019, Vol. 39, no 1, p. 41-54Article in journal (Refereed)
    Abstract [en]

    It is often argued that it does not matter morally whether biomedical interventions treat or prevent diseases or enhance nondisease traits; what matters is whether and how much they promote well-being. Therapy and enhancement both promote well-being, the argument goes, so they are not morally distinct but instead continuous. I provide three reasons why this argument should be rejected when it is applied to choices concerning the genetic makeup of future people. First, it rests on too simple a conception of the badness of disease. Second, it wrongly assumes that disease avoidance and enhancement can proceed with similar accuracy. Third, it overlooks that disease avoidance tends to be more urgent than enhancement from the point of view of distributive justice. Although none of these reasons establishes a firm therapy-enhancement distinction, they show that a continuum model is not an attractive alternative.

  • 215.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Reproductive technologies and the question of the child's future freedom2009In: Ethics, law and society, vol. 4 / [ed] Holm, S.J., Gunning, J. & Kenway, I., Aldershot: Ashgate, 2009, p. 279-288Chapter in book (Other academic)
    Abstract [en]

    This is the second volume in a series exploring key issues in ethics, law and society, published in association with the Cardiff Centre for Ethics, Law and Society. This volume presents a selection of papers and commentaries on topics in bioethics, ethics and society, and business and professional ethics. Multidisciplinary in approach, the work will be a valuable resource for all those concerned with contemporary ethical issues.

  • 216.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Reprogenetics and the ‘Parents Have Always Done It’ Argument2011In: The Hastings center report, ISSN 0093-0334, E-ISSN 1552-146X, Vol. 41, no 1, p. 43-49Article in journal (Refereed)
    Abstract [en]

    In debates about the ethics of so-called reprogenetic technologies one often comes across the following line of reasoning. Parents have always shaped their children’s characteristics through rearing and education; such shaping is morally acceptable or even required; choosing children’s characteristics by means of reprogenetic technologies is just like shaping these characteristics through rearing and education; hence reprogenetic child shaping should also be considered morally acceptable or required. This argument suffers from several weaknesses. Above all, it rests on a mistaken analogy. Reprogenetic child shaping is in fact not at all like rearing and education. The difference between the two practices, and the moral salience of that difference, can be brought out with the help of two related approaches insufficiently explored in contemporary bioethics: hermeneutics and Aristotelian practical philosophy.

  • 217.
    Malmqvist, Erik
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    The right to participate in high-risk research2014In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 384, no 9938, p. 128-128Article in journal (Other academic)
  • 218.
    Malmqvist, Erik
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Trading hair, trading cadaver tissue: On the ethics of commodifying bodily sacrifices and gifts2012In: The body as gift, resource, and commodity: exchanging organs, tissues, and cells in the 21st century / [ed] Martin Gunnarson & Fredrik Svenaeus, Huddinge: Södertörn Högskola , 2012, p. 296-320Chapter in book (Other academic)
    Abstract [en]

    Departing from three metaphors—the body as gift, resource, and commodity—the book explores the contemporary exchange of organs, tissues, and cells. Although the gift is the sanctioned metaphor for donating parts of the body, the underlying perspective from the side of states, authorities, and the medical establishment often seems to be that the body shall be understood as a resource. But medicine, as some of the contributors to this book show, is not sealed off from the market economy. Increasingly, therefore, body parts become commodities on legal as well as illegal markets. The chapters of the book are arranged in a way that presents, one after the other, the three metaphors of the body, starting with the body as gift, proceeding by way of the body as resource, and ending in the body as commodity. Although all three metaphors as ways of conceptualizing and making use of the human body can be found throughout human history, the present drive of commercialization will increasingly force us to identify and scrutinize the way these metaphors are used. Not only in addressing the fascinating question of what kind of an object (subject) the human body is, but also in trying to decipher what interests lurk behind the use of the metaphors in question when claiming that human bodies, organs, tissues, and cells are gifts, resources or commodities. The ambition of this volume is to address and remedy the need of a hermeneutics not only of depth, but also of suspicion, in the case of organ transplantation and other medical technologies involving the transfer of human tissues and cells.

  • 219.
    Malmqvist, Erik
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Transnational commercial surrogacy, exploitation and the non-worseness claim2014Conference paper (Other academic)
  • 220.
    Malmqvist, Erik
    et al.
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Franssen, Trijsje
    University of Amsterdam, Netherlands.
    Heracles or Icarus: Mythological References in the Human Enhancement Debate2017In: Future-human.life / [ed] Vincent Menuz, Johann Roduit, Daniel Roiz, Alexandre Erler, Natalia Stepanova, Geneva: neohumanitas.org , 2017, p. 52-61Chapter in book (Refereed)
  • 221. Malmqvist, Erik
    et al.
    Furberg, Elisabeth
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sandman, Lars
    Ethical aspects of medical age assessment in the asylum process: a Swedish perspective2018In: International journal of legal medicine (Print), ISSN 0937-9827, E-ISSN 1437-1596, Vol. 132, no 3, p. 815-823Article in journal (Refereed)
    Abstract [en]

    According to European regulations and the legisla-tions of individual member states, children who seek asylum have a different set of rights than adults in a similar position.To protect these rights and ensure rule of law, migration authorities are commonly required to assess the age of asylum seekers who lack reliable documentation, including throug hvarious medical methods. However, many healthcare professionals and other commentators consider medical age assessment to be ethically problematic. This paper presents a simplified and amended account of the main findings of a recent ethical analysis of medical age assessment in the asylum process commissioned by the Swedish National Board of Healthand Welfare. A number of ethical challenges related to conflicting goals, equality and fairness, autonomy and informed consent, privacy and integrity, and professional values and roles are identified and analysed. It is concluded that most of these challenges can be met, but that this requires a system where the assessment is sufficiently accurate and where adequate safeguards are in place. Two important ethical questions are found to warrant further analysis. The first is whether asylum seekers’consent to the procedure can be considered genuinely voluntary. The second is whether and how medica lage assessments could affect negative public attitudes towards asylum seekers or discriminatory societal views more generally.

  • 222.
    Malmqvist, Erik
    et al.
    Université Paris Descartes, France.
    Helgesson, Gert
    Karolinska institutet, Stockholm.
    Natunen, Kari
    University of Tampere, Finland.
    Lehtinen, Johannes
    University of Tampere, Finland.
    Lehtinen, Matti
    University of Tampere, Finland.
    The ethics of implementing human papillomavirus vaccination in developed countries2011In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 14, no 1, p. 19-27Article in journal (Refereed)
    Abstract [en]

    Human papillomavirus (HPV) infection is the world’s most common sexually transmitted infection. It is a prerequisite for cervical cancer, the second most common cause of death in cancer among women worldwide, and is also believed to cause other anogenital and head and neck cancers. Vaccines that protect against the most common cancer-causing HPV types have recently become available, and different countries have taken different approaches to implementing vaccination. This paper examines the ethics of alternative HPV vaccination strategies. It devotes particular attention to the major arguments for and against one strategy: voluntary, publicly funded vaccination for all adolescent boys and girls. This approach seems attractive because it would protect more people against cervical cancer and other HPV-related cancers than less inclusive alternatives, without the sacrifice of autonomy that a comparably broad compulsory programme would require. Also, the herd immunity that it would likely generate would protect those who remain unvaccinated, a major advantage from a justice perspective. However, there is a possibility that a HPV vaccination programme targeting all adolescents of both sexes is not considered sufficiently cost-effective. Also, it might pose more difficulties for achieving informed consent than comparable vaccination programmes against other diseases. Ultimately, society’s choice of HPV vaccination strategy requires careful consideration not only of the values at stake but also of available and emerging scientific evidence.

  • 223.
    Malmqvist, Erik
    et al.
    Centre for Research on Meaning, Ethics and Society, Université Paris Descartes, Paris, France.
    Juth, Niklas
    Centre for Healthcare Ethics , Karolinska institutet, Stockholm.
    Lynöe, Niels
    Centre for Healthcare Ethics , Karolinska institutet, Stockholm.
    Helgesson, Gert
    Early stopping of clinical trials: Charting the ethical terrain2011In: Kennedy Institute of Ethics journal (Print), ISSN 1054-6863, E-ISSN 1086-3249, Vol. 21, no 1, p. 57-78Article in journal (Refereed)
    Abstract [en]

    The decision to terminate a clinical trial earlier than planned isoften described as ethically problematic, but it is rarely systematically analyzedas an ethical issue in its own right. This paper provides an overview of the mainethical considerations at stake in such decisions and of the main tensions betweenthese considerations. Arguments about informed consent and the impact of earlystopping on research and society are explored. We devote particular attentionto a familiar conflict that arises with special urgency when early data suggestthat the experimental treatment is superior. Should the trial be stopped so thatparticipants in the control group will not be allocated a seemingly inferior treatment,or should it continue in pursuit of evidence conclusive enough to improvethe care of future patients? We scrutinize three ways to address this problem.Rather than dissolving the tension, they represent different trade-offs betweenthe respective welfare interests of subjects and future patients.

  • 224.
    Malmqvist, Erik
    et al.
    Université Paris Descartes, France .
    Natunen, Kari
    University of Tampere, Finland .
    Lehtinen, Matti
    University of Tampere, Finland .
    Helgesson, Gert
    Karolinska Institutet, Stockholm.
    Just implementation of human papillomavirus vaccination2012In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 38, no 4, p. 247-249Article in journal (Refereed)
    Abstract [en]

    Many countries are now implementing human papillomavirus vaccination. There is disagreement about who should receive the vaccine. Some propose vaccinating both boys and girls in order to achieve the largest possible public health impact. Others regard this approach as too costly and claim that only girls should be vaccinated. We question the assumption that decisions about human papillomavirus vaccination policy should rely solely on estimates of overall benefits and costs. There are important social justice aspects that also need to be considered. Policy makers should consider how to best protect individuals who will remain unvaccinated through no fault of their own. This is especially important if these individuals are already disadvantaged in other ways and if vaccinating other people increases their risk of infection.

  • 225.
    Malmqvist, Erik
    et al.
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Zeiler, KristinLinköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Bodily Exchanges, Bioethics and Border Crossing: Perspectives on Giving, Selling and Sharing Bodies2016Collection (editor) (Refereed)
    Abstract [en]

    Medical therapy, research and technology enable us to make our bodies, or parts of them, available to others in an increasing number of ways. This is the case in organ, tissue, egg and sperm donation as well as in surrogate motherhood and clinical research. Bringing together leading scholars working on the ethical, social and cultural aspects of such bodily exchanges, this cutting-edge book develops new ways of understanding them.

    Bodily Exchanges, Bioethics and Border Crossing both probes the established giving and selling frameworks for conceptualising bodily exchanges in medicine, and seeks to develop and examine another, less familiar framework: that of sharing. A framework of sharing can capture practices that involve giving up and giving away part of one’s body, such as organ and tissue donation, and practices that do not, such as surrogacy and research participation. Sharing also recognizes the multiple relationalities that these exchanges can involve and invites inquiry into the context in which they occur. In addition, the book explores the multiple forms of border crossing that bodily exchanges in medicine involve, from the physical boundaries of the body to relational borders – as can happen in surrogacy – to national borders and the range of ethical issues that these various border-crossings can give rise to. 

    Engaging with anthropology, sociology, philosophy, and feminist and postcolonical perspectives, this is an original and timely contribution to contemporary bioethics in a time of increasing globalization. It will be of use to students and researchers from a range of humanities and social science backgrounds as well as medical and other healthcare professionals with an interest in bioethics.

  • 226.
    Malmqvist, Erik
    et al.
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Zeiler, Kristin
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Concluding reflections: Bodily exchanges as sharing2016In: Bodily Exchanges, Bioethics and Border Crossing: Perspectives on Giving, Selling and Sharing Bodies / [ed] Erik Malmqvist, Kristin Zeiler, London and New York: Routledge, 2016, p. 197-207Chapter in book (Refereed)
  • 227.
    Malmqvist, Erik
    et al.
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Zeiler, Kristin
    Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    Introduction2016In: Bodily Exchanges, Bioethics and Border Crossing: Perspectives on Giving, Selling and Sharing Bodies / [ed] Erik Malmqvist, Kristin Zeiler, London and New York: Routledge, 2016, p. 1-18Chapter in book (Refereed)
  • 228.
    Malmsten Gedda, Kersti
    Mälardalen University, Department of Caring and Public Health Sciences.
    Feministisk etik – en analytisk dimension inom vårdetiken2006In: Nya vägar i vårdetiken, Lund: Studentlitteratur , 2006Chapter in book (Refereed)
  • 229.
    Manninen, Katri
    et al.
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet; Karolinska Universitetssjukhuset.
    Björling, Gunilla
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Ethical Coffee Room: ett EU-projekt om etiska frågor och diskussioner i verksamhetsförlagd utbildning för sjuksköterskestudenter2019Other (Other (popular science, discussion, etc.))
    Abstract [sv]

    Projektet Simulation in Ethics, SimE, syftar till att öka den etiska kompetensen hos sjuksköterskestudenter i Norden och Baltikum. Projektet pågår under åren 2017-2019 i samarbete mellan Röda Korsets Högskola, Turku University of Applied Sciences (Finland) och Riga Medical College of the University of Latvia (Lettland)  och är finansierat av EU och Interregional Central Baltic Programme.

    I projektet ingår att planera och genomföra tre kurser: Basic Theories of Ethics (2 ECTS), Ethical Coffee Room (1 ETCS) and Simulation in Ethics (3ECTS) som görs gemensamt av de tre partnerorganisationer. Kurserna finns på en digital plattform med web-seminarier och diskussionsforum som resurs för studenterna. Språket är engelska. I kurs 1 ges grunderna i etik och etiska teorier och begrepp. Kurs 2 handlar om att tillämpa och diskutera teoretiska kunskaper och erfarenheter i etik i en autentisk miljö i den verksamhetsförlagda utbildningen. I kurs 3 genomförs simuleringar där studenterna aktivt medverkar i simuleringsscenarier med efterföljande etisk reflektion. Gemensamma kurser i etik bidrar till en mer harmoniserad utbildning och kompetens inom regionen och främjar mobilitet av arbetskraft och bättre patientvård. Efter avslutat projekt kommer allt kursmaterial inklusive en handbok att finnas fritt tillgängligt och kunna användas av alla utbildningar inom hälso- och sjukvård. Röda Korsets Högskola har huvudansvaret för kurs 2 och vi har under våren genomfört en pilot-testning av den, Ehtical Coffee Room, i termin 3 med gott resultat.

  • 230.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ethics, Law and Governance of Biobanking:National, European and International Approaches2015 (ed. 1)Book (Refereed)
    Abstract [en]

    Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the  borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it?This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent?An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.

  • 231.
    Mascalzoni, Deborah
    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.
    Dove, Edward S
    Rubinstein, Yaffa
    Dawkins, Hugh J S
    Kole, Anna
    McCormack, Pauline
    Woods, Simon
    Riess, Olaf
    Schaefer, Franz
    Lochmüller, Hanns
    Knoppers, Bartha M
    Hansson, Mats
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    International Charter of principles for sharing bio-specimens and data2015In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 23, p. 721-728Article in journal (Refereed)
    Abstract [en]

    There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term value and exploit their potential for health discovery and validation. This is especially evident for rare disease research. Currently, the rising value of data and bio-specimen collections does not correspond with an equal increase in data/sample-sharing and data/sample access. Contradictory legal and ethical frameworks across national borders are obstacles to effective sharing: more specifically, the absence of an integrated model proves to be a major logistical obstruction. The Charter intends to amend the obstacle by providing both the ethical foundations on which data sharing should be based, as well as a general Material and Data Transfer Agreement (MTA/DTA). This Charter is the result of a careful negotiation of different stakeholders' interest and is built on earlier consensus documents and position statements, which provided the general international legal framework. Further to this, the Charter provides tools that may help accelerate sharing. The Charter has been formulated to serve as an enabling tool for effective and transparent data and bio-specimen sharing and the general MTA/DTA constitutes a mechanism to ensure uniformity of access across projects and countries, and may be regarded as a consistent basic agreement for addressing data and material sharing globally. The Charter is forward looking in terms of emerging issues from the perspective of a multi-stakeholder group, and where possible, provides strategies that may address these issues.

  • 232.
    Mascalzoni, Deborah
    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.
    Hicks, Andrew
    Pramstaller, Peter
    Wjst, Matthias
    Informed consent in the genomics era.2008In: PLoS Medicine, ISSN 1549-1277, E-ISSN 1549-1676, Vol. 5, no 9, p. e192-194Article in journal (Refereed)
  • 233.
    Mascalzoni, Deborah
    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.
    Paradiso, Angelo
    Rare disease research: Breaking the privacy barrier2014In: Applied & Translational Genomics, Vol. 3, no 2, p. 23-29Article in journal (Refereed)
    Abstract [en]

    Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs. Data sharing of registries is therefore a unique resource to allow rare disease research to flourish and any lost data will jeopardize the quality of an already extremely difficult research. The rules usually applied to research such as the right to withdraw or the need for specific consent for every use of data can be detrimental in order to get effective results. Privacy rights regulated through traditional informed consent mechanisms have been regarded as a major barrier in order to effectively share data worldwide. Some authors argue that this barrier hampers results that could be beneficial to the patients so that another right will be overstated: the right to quality healthcare. We argue in this paper that privacy has been often interpreted just one-sided as the right to secrecy but it can entail another meaning: the right to manage one's own private sphere. Managing it pertains, not only to the right to deny access, but also to the right to grant access. At the same time research on patient participation and transparency shows that new forms of IT-based informed consent can provide a good balance between the right of individuals to be in control of their data and the opportunity for science to pursue international research.

  • 234.
    Mascalzoni, Deborah
    et al.
    Center of Biomedicine, European Academy, Bolzano, Italy.
    Pramstaller, Peter
    Corradetti, Claudio
    Patient centric initiatives (PCIs) - a shift in the governance of science: Lessons from the biobanks world2014In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Vol. 9, no 2, p. 52-54Article, review/survey (Refereed)
  • 235.
    Matar, Amal
    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.
    Garner, Sam
    Millum, Joseph
    Sina, Barbara
    Silverman, Henry
    Curricular Aspects of the Fogarty Bioethics International Training Programs2014In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654, Vol. 9, no 2, p. 12-23Article in journal (Refereed)
    Abstract [en]

    THE CURRICULUM DESIGN, FACULTY characteristics, and experience of implementing masters' level international research ethics training programs supported by the Fogarty International Center was investigated. Multiple pedagogical approaches were employed to adapt to the learning needs of the trainees. While no generally agreed set of core competencies exists for advanced research ethics training, more than 75% of the curricula examined included international issues in research ethics, responsible conduct of research, human rights, philosophical foundations of research ethics, and research regulation and ethical review process. Common skills taught included critical thinking, research methodology and statistics, writing, and presentation proficiency. Curricula also addressed the cultural, social, and religious context of the trainees related to research ethics. Programs surveyed noted trainee interest in Western concepts of research ethics and the value of the transnational exchange of ideas. Similar faculty expertise profiles existed in all programs. Approximately 40% of faculty were female. Collaboration between faculty from low- and middle-income countries (LMICs) and high-income countries (HICs) occurred in most programs and at least 50% of HIC faculty had previous LMIC experience. This paper is part of a collection of papers analyzing the Fogarty International Research Ethics Education and Curriculum Development program.

  • 236.
    Matar, Amal
    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.
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    "A perfect society": Swedish policymakers' ethical and social views on preconception expanded carrier screening2019In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 10, no 2, p. 267-280Article in journal (Refereed)
    Abstract [en]

    To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization’s definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers’ perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.

  • 237. Middleton, Anna
    et al.
    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.
    Prainsack, Barbara
    Bobe, Jason
    Farley, Lauren
    Steed, Claire
    Smith, James
    Bevan, Paul
    Bonhomme, Natasha
    Kleiderman, Erika
    Thorogood, Adrian
    Schickhardt, Christoph
    Garattini, Chiara
    Vears, Danya
    Littler, Katherine
    Banner, Natalie
    Scott, Erick
    Kovalevskaya, Nadezda V
    Levin, Elissa
    Morley, Katherine I
    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.
    'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods2018In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828X, Vol. 15, no 4, p. 311-318Article in journal (Refereed)
    Abstract [en]

    Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.

  • 238. Munck, Johan
    et al.
    Dahlquist, Gisela
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Grönlund, Eva
    [The possibility to perform research on severely ill elderly. We hope there will be a change of the law soon]2011In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 108, no 44, p. 2201-Article in journal (Refereed)
  • 239. Munthe, Christian
    et al.
    Sandman, Lars
    Cutas, Daniela
    Umeå University, Faculty of Arts, Department of historical, philosophical and religious studies.
    Person centred care and shared decision making: implications for ethics, public health and research2012In: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 20, no 3, p. 231-249Article in journal (Refereed)
    Abstract [en]

    This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective.This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective.

  • 240.
    Murano, Maria Cristina
    Linköping University, Department of Culture and Communication. Linköping University, Faculty of Arts and Sciences.
    Critical paediatric bioethics and the treatment of short stature: an interdisciplinary study2019Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Several studies have argued that there is a correlation between short stature and negative experiences and characteristics, such as social discrimination, economic disadvantage, health problems (especially for men). The idea that short men have a disadvantage in social interactions and in partner choices is also widespread in popular culture and common knowledge. It is now possible to use recombinant human growth hormone (hGH) to treat children with idiopathic short stature (ISS), namely children who are shorter than average for unknown medical reasons. Critics argue that there is a lack of evidence of both psychological distress caused by short stature and the efficacy of the treatment in increasing children’s well-being. This controversy is reflected in international drug evaluations: while the Food and Drug Administration (FDA) in the US granted marketing authorisation for hGH for children with ISS in 2003, the European Medicines Agency (EMA) refused it in 2007.

    The research presented here had two aims: first, to identify and analyse the norms, values and assumptions about short stature and the use of hGH treatment for children with ISS, found within sociocultural, philosophical and regulatory discussions of these, and within narrated lived experiences of short stature. Second, to critically and reflectively discuss how these analyses contribute to bioethical debates on the use of hGH treatment for children with ISS. It employs what it calls a critical paediatric bioethics theoretical approach, which deems as important to carefully analyse different reasoning, conceptualisations and arguments around the object of study, through a self-reflective analysis that is also sceptical about other forms of problematisation, and that combines philosophical analyses while being open to social implications and drawing upon empirical methods.

    The first article proposes a critical understanding of medicalisation as both a concept and a phenomenon, and explores what insights such critical understanding brings to ethical discussions about hGH for ISS. It argues that three main ethical issues concern the medicalisation of short stature: the downplayed role of the qualitative dimension of short stature, the justification of the treatment (as sometimes based on uncritically assumed social beliefs and unrealistic parental expectations), and possible misconduct of stakeholders.

    The second article examines the arguments for and against granting marketing authorisation of hGH treatment for the indication of ISS presented in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘what’s the problem represented to be’ and focuses on underlying assumptions and presuppositions about short stature and hGH treatment for ISS. It then discusses these arguments through the relational, experiential and cultural understandings of disability, and argues that the choice about whether to give hGH is not merely a choice based on efficacy and safety, but requires an examination of the values that we transmit by that choice.

    The third article examines how and why attendance to lived experiences of height is needed in bioethical and biomedical discussions of hGH treatment for children with ISS. It first describes what it defines as the ‘problem-oriented’ approach to the debate about hGH treatment for children with ISS. It then offers a sociophenomenological analysis of whether and, if so, when and how, height matters to the interviewed people in the Netherlands who are shorter than average without any known medical reasons. The sociophenomenological analysis shows the richness of meanings of lived experiences of short stature that cannot be captured by the problem-oriented approach, and suggests complementing clinical practices with narrative approaches.

    This research contributes to the ethical debate about using hGH for children with ISS, setting a critical gaze onto the social perception of short stature, highlighting some ethical challenges met by stakeholders involved at different levels (such as families, medical professionals and policy makers), and providing new insights into how to address these ethical issues. It is, therefore, of interest to stakeholders, bioethicists and lay people willing to explore alternative ways to address such bioethical dilemmas, and other paediatric interventions that aim to normalise children’s bodily characteristics.

  • 241.
    Murano, Maria Cristina
    Linköping University, Department of Culture and Communication. Linköping University, Faculty of Arts and Sciences.
    Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects2018In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, no 2, p. 243-253Article in journal (Refereed)
    Abstract [en]

    In 2003, the Food and Drug Administration approved the use of growth hormone treatment for idiopathic short stature children, i.e. children shorter than average due to an unknown medical cause. Given the absence of any pathological conditions, this decision has been contested as a case of medicalisation. The aim of this paper is to broaden the debate over the reasons for and against the treatment, to include considerations of the sociocultural phenomenon of the medicalisation of short stature, by means of a critical understanding of the concept of medicalisation. After defining my understanding of medicalisation and describing both the treatment and the condition of idiopathic short stature, I will problematise two fundamental issues: the medical/non-medical distinction and the debate about the goals of medicine. I will analyse them, combining perspectives of bioethics, medical sociology, philosophy of medicine and medical literature, and I will suggest that there are different levels of normativity of medicalisation. Ultimately, this study shows that: (1) the definition of idiopathic short stature, focusing only on actual height measurement, does not provide enough information to assess the need for treatment or not; (2) the analysis of the goals of medicine should be broadened to include justifications for the treatment; (3) the use of growth hormone for idiopathic short stature involves strong interests from different stakeholders. While the treatment might be beneficial for some children, it is necessary to be vigilant about possible misconduct at different levels of medicalisation.

  • 242.
    Murano, Maria Cristina
    et al.
    Linköping University, Department of Culture and Communication. Linköping University, Faculty of Arts and Sciences. Medicine, Science, Health and Society (Cermes3), School for Advanced Studies in the Social Sciences (EHESS), Paris, France ; Center for Bioethics, Children’s Mercy Kansas City, Kansas City, MO, USA.
    Slatman, Jenny
    Department of Culture Studies, Tilburg University, Tilburg, The Netherlands.
    Zeiler, Kristin
    Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
    How sociophenomenology of the body problematises the ‘problem-oriented approach’ to growth hormone treatment2018In: Medical Humanities, ISSN 1468-215X, E-ISSN 1473-4265Article in journal (Refereed)
    Abstract [en]

    This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon (1) is active engagement in space, (2) coshapes habituated ways of behaving and (3) is shaped by gendered norms and beliefs about height. Based on this analysis, the article challenges what we label as the ‘problem-oriented approach’ to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height.

  • 243. Männimägi, Karen
    Möten med patienten under den perioperativa vårdprocessen: Operationssjuksköterskans perspektiv2017Independent thesis Advanced level (degree of Master (One Year)), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Introduction: Operating theatre nurses have limited opportunities to meet the patient and studies focuses mainly on the intraoperative care. Operating theatre nurse meets the patient briefly just before the surgery together with other members of the surgical team. Aim: The aim of the study was to describe operating theatre nurse´s experiences of meeting with the patient during the perioperative nursing process.Method: The study was a qualitative interview study. In total six interviews with operating theatre nurses with at least three years of professional experience and were working at a hospital in central Sweden. The data was analysed through a content analysis. Results: The analysis revealed three categories with associated subcategories that described the operating theatre nurses´ meeting with the patient in the perioperative care: To establish a first contactto make themselves known, to create a care relationship, making the patient involved in care; To ensure patient care – to prevent patient exposure to injuries, having the opportunity to evaluate the implemented care measures; To preserve patient privacy – wanting to do good. Conclusion: In the meeting with the patient a care relationship is created, which makes the patient involved in the care and the operating theatre nurse is given the opportunity to plan, to implement and to evaluate the implemented care measures, which contributes to the development of the patient´s care and the operating theatre nurse´s competence.

  • 244.
    Niemiec, Emilia
    et al.
    Univ Bologna, CIRSFID, Erasmus Plus Doctoral Programme Law Sci & Technol, Via Galliera 3, I-40121 Bologna, Italy.;Univ Turin, Dept Law, Turin, Italy.;Leibniz Univ Hannover, Ctr Eth & Law Life Sci, Hannover, Germany..
    Borry, Pascal
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Leuven, Belgium..
    Pinxten, Wim
    Hasselt Univ, Fac Med & Life Sci, Hasselt, Belgium..
    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.
    Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies2016In: Human Mutation, ISSN 1059-7794, E-ISSN 1098-1004, Vol. 37, no 12, p. 1248-1256Article in journal (Refereed)
    Abstract [en]

    Whole exome sequencing (WES) and whole genome sequencing (WGS) have become increasingly available in the research and clinical settings and are now also being offered by direct-to-consumer (DTC) genetic testing (GT) companies. This offer can be perceived as amplifying the already identified concerns regarding adequacy of informed consent (IC) for both WES/WGS and the DTC GT context. We performed a qualitative content analysis of Websites of four companies offering WES/WGS DTC regarding the following elements of IC: pre-test counseling, benefits and risks, and incidental findings (IFs). The analysis revealed concerns, including the potential lack of pre-test counseling in three of the companies studied, missing relevant information in the risks and benefits sections, and potentially misleading information for consumers. Regarding IFs, only one company, which provides opportunistic screening, provides basic information about their management. In conclusion, some of the information (and related practices) present on the companies' Web pages salient to the consent process are not adequate in reference to recommendations for IC for WGS or WES in the clinical context. Requisite resources should be allocated to ensure that commercial companies are offering high-throughput sequencing under responsible conditions, including an adequate consent process.

  • 245. Niemiec, Emilia
    et al.
    Howard, Heidi Carmen
    Consenting Patients to Genome Sequencing2019In: Clinical Genome Sequencing: Psychological Considerations, Elsevier, 2019Chapter in book (Refereed)
  • 246. Niemiec, Emilia
    et al.
    Vears, D. F.
    Borry, P.
    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.
    Readability of informed consent forms for whole-exome and whole-genome sequencing2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 143-151Article in journal (Refereed)
    Abstract [en]

    Whole-exome and whole-genome sequencing (WES, WGS) can generate an unprecedented amount of complex information, making the informed consent (IC) process challenging. The aim of our study was to assess the readability of English IC forms for clinical whole-exome and whole-genome sequencing using the SMOG and Flesch-Kincaid formulas. We analysed 36 forms, most of which were from US providers. The median readability grade levels were 14.75 (the SMOG formula) and 12.2 (the Flesch-Kincaid formula); these values indicate the years of education after which a person would be able to understand a text studied. All forms studied seem to fail to meet the average recommended readability grade level of 8 (e.g. by Institutional Review Boards of US medical schools) for IC forms, indicating that the content of the forms may not be comprehensible to many patients. The sections aimed at health care professionals (HCPs) in the forms indicate that HCPs should be responsible for explaining IC information to the patients. However, WES and WGS may be increasingly offered by primary care professionals who may not (yet) have sufficient training to be able to communicate effectively with patients about genomics. Therefore, to secure an adequate, truly informed consent process, the task of developing good, legible examples of IC forms along with educating HCPs in genomics should be taken seriously, and adequate resources should be allocated to enable these tasks.

  • 247.
    Nihlén Fahlquist, Jessica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Vaccine hesitancy and trust: Ethical aspects of risk communication2018In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 46, no 2, p. 182-188Article in journal (Refereed)
    Abstract [en]

    Aim: This paper analyses vaccination policy from an ethical perspective, against the background of the growing hesitancy towards e.g. the measles vaccine. Methods: The paper is normative and analyses ethical aspects of risk communication in the context of vaccination. It is argued that ethical analysis of risk communication should be done at the level of the message, the procedure and the effects. The paper takes examples from the Swedish context, linking the current lack of trust in experts to the 2009 vaccination policy and communication promoting the H1N1 vaccine Pandemrix. Results: During the Swedish H1N1 vaccination policy in 2009, the message was that the vaccine is safe. However, a group of adolescents developed narcolepsy as a side effect of the vaccine. Taking this into account, it becomes clear that the government should communicate risks and benefits responsibly and take responsibility for individuals affected negatively by populational health interventions. Conclusion: To communicate respectfully entails not treating vaccine sceptics as ill-informed or less educated, but instead taking the concerns of the vaccine hesitant, who potentially could change their minds, as a starting-point of a respectful discussion. There will inevitably be individuals who suffer from side effects of justifiable population-based health promotion activities. However, the public should be able to trust the message and count on the government to take responsibility for individuals affected by side effects. This is important for normative reasons, but is additionally likely to contribute to restored and maintained trust.

  • 248.
    Nilsson, Andreas
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Anaesthesiology and Intensive Care in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science.
    Szabó, Zoltán
    Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Thoracic and Vascular Surgery.
    Harangi, Márta
    Linköping Municipality, Department of Education, Admissions Office of the Introduction Program, Common Management and Qualified Operational Support, Reception Group for Introduction Programs, Linköping, Sweden.
    Davidsson, Bo
    Linköping Municipality, Division of Research and Development, Linköping, Sweden.
    Dual professional focus clinical case processed in an interprofessional postgraduate case seminar: Experiences from participants and the perceptions of a professional observer2016In: MedEdPubish, ISSN 2312–7996Article in journal (Refereed)
    Abstract [en]

    Background: Inadequate communication between professionals in operating theaters results in impaired medical performance or even in critical events. Interprofessional case seminars, however, can enhance team communication by promoting a deeper understanding of complex situations. Our aim was to evaluate how an interprofessional case seminar using a dual professional focus case in anesthesiology was perceived by the participants. Method: A case seminar was held for 20 nurse anesthetists enrolled in a postgraduate course and for six anesthesiology residents. Transcripts of the case were distributed in advance for individual study and group discussion. The evaluation was based on the responses provided by participants who completed a semistructured questionnaire and from the perceptions of a professional observer. Results: Twenty participants completed the questionnaire; 53% of the respondents had previous experience with case methodology, and 89 different statements were obtained. Of these, 48% were positive and 11% were negative. The remaining 40% of the statements related to previous experiences with case methodology and to suggested improvements. The positive statements proposed that case methodologies are suitable for sensitive issues and beneficial for meetings and exchanges between different professionals. Negative statements focused instead on lack of time, overly large groups, too much speculation, and inadequate preparation or presentations by the participants. Conclusion: Interprofessional case seminars using a dual professional focus may be suitable for postgraduate education in anesthesia. This technique may improve interprofessional communication and may call attention to the importance of soft issues, such as ethics, communication, organization, and leadership in addition to that of the medical dimension.

  • 249. Nilsson, Peter M
    et al.
    Pedersen, Nancy
    Lind, Lars
    Björkelund, Cecilia
    Hallmans, Göran
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Nutritional Research.
    Söderkvist, Peter
    [Population studies are needed: also LifeGene!]2012In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 109, no 9-10, p. 484-Article in journal (Other academic)
  • 250.
    Njozing, Barnabas N
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. St. Mary Soledad Catholic Hospital, Mankon, Bamenda, P.O.Box 157, Cameroon.
    Edin, Kerstin E
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    San Sebástian, Miguel
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Hurtig, Anna-Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    “If the patients decide not to tell what can we do?”: TB/HIV counsellors’ dilemma on partner notification for HIV2011In: BMC International Health and Human Rights, ISSN 1472-698X, E-ISSN 1472-698X, Vol. 11, article id 6Article in journal (Refereed)
    Abstract [en]

    Background: There is a global consensus towards universal access to human immunodeficiency virus (HIV) services consequent to the increasing availability of antiretroviral therapy. However, to benefit from these services, knowledge of one's HIV status is critical. Partner notification for HIV is an important component of HIV counselling because it is an effective strategy to prevent secondary transmission, and promote early diagnosis and prompt treatment of HIV patients' sexual partners. However, counsellors are often frustrated by the reluctance of HIV-positive patients to voluntarily notify their sexual partners. This study aimed to explore tuberculosis (TB)/HIV counsellors' perspectives regarding confidentiality and partner notification. Methods: Qualitative research interviews were conducted in the Northwest Region of Cameroon with 30 TB/HIV counsellors in 4 treatment centres, and 2 legal professionals between September and December 2009. Situational Analysis (positional map) was used for data analysis. Results: Confidentiality issues were perceived to be handled properly despite concerns about patients' reluctance to report cases of violation due to apprehension of reprisals from health care staffs. All the respondents encouraged voluntary partner notification, and held four varying positions when confronted with patients who refused to voluntarily notify their partners. Position one focused on absolute respect of patients' autonomy; position two balanced between the respect of patients' autonomy and their partners' safety; position three wished for protection of sexual partners at risk of HIV infection and legal protection for counsellors; and position four requested making HIV testing and partner notification routine processes. Conclusion: Counsellors regularly encounter ethical, legal and moral dilemmas between respecting patients' confidentiality and autonomy, and protecting patients' sexual partners at risk of HIV infection. This reflects the complexity of partner notification and demonstrates that no single approach is optimal, but instead certain contextual factors and a combination of different approaches should be considered. Meanwhile, adopting a human rights perspective in HIV programmes will balance the interests of both patients and their partners, and ultimately enhance universal access to HIV services.

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