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  • 151.
    Howard, Heidi Carmen
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Knoppers, Bartha Maria
    Cornel, Martina C
    Wright Clayton, Ellen
    Sénécal, Karine
    Borry, Pascal
    Whole-genome sequencing in newborn screening?: A statement on the continued importance of targeted approaches in newborn screening programmes2015In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 23, no 12, p. 1593-1600Article in journal (Refereed)
    Abstract [en]

    The advent and refinement of sequencing technologies has resulted in a decrease in both the cost and time needed to generate data on the entire sequence of the human genome. This has increased the accessibility of using whole-genome sequencing and whole-exome sequencing approaches for analysis in both the research and clinical contexts. The expectation is that more services based on these and other high-throughput technologies will become available to patients and the wider population. Some authors predict that sequencing will be performed once in a lifetime, namely, shortly after birth. The Public and Professional Policy Committee of the European Society of Human Genetics, the Human Genome Organisation Committee on Ethics, Law and Society, the PHG Foundation and the P3G International Paediatric Platform address herein the important issues and challenges surrounding the potential use of sequencing technologies in publicly funded newborn screening (NBS) programmes. This statement presents the relevant issues and culminates in a set of recommendations to help inform and guide scientists and clinicians, as well as policy makers regarding the necessary considerations for the use of genome sequencing technologies and approaches in NBS programmes. The primary objective of NBS should be the targeted analysis and identification of gene variants conferring a high risk of preventable or treatable conditions, for which treatment has to start in the newborn period or in early childhood.

  • 152.
    Howard, Heidi Carmen
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Mabile, Laurence
    Houeland, Gry
    Rial-Sebbag, Emmanuelle
    Cambon-Thomsen, Anne
    How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 169-176Article in journal (Refereed)
    Abstract [en]

    Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks. While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such responsible and extensive sharing. Germane to the discussion herein is the barrier to collecting and sharing bioresources related to the lack of proper recognition of researchers and clinicians who developed the bioresource. Indeed, the efforts and resources invested to set up and sustain a bioresource can be enormous and such work should be easily traced and properly recognised. However, there is currently no such system that systematically and accurately traces and attributes recognition to those doing this work or the bioresource institution itself. As a beginning of a solution to the "recognition problem", the Bioresource Research Impact Factor/Framework (BRIF) initiative was proposed almost a decade and a half ago and is currently under further development. With the ultimate aim of increasing awareness and understanding of the BRIF, in this article, we contribute the following: (1) a review of the objectives and functions of the BRIF including the description of two tools that will help in the deployment of the BRIF, the CoBRA (Citation of BioResources in journal Articles) guideline, and the Open Journal of Bioresources (OJB); (2) the results of a small empirical study on stakeholder awareness of the BRIF and (3) a brief analysis of the ethical dimensions of the BRIF which allow it to be a positive contribution to responsible biobanking.

  • 153.
    Howard, Heidi Carmen
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    van El, Carla G.
    Vrije Univ Amsterdam Med Ctr, Dept Clin Genet, Sect Community Genet, Amsterdam.; Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam.
    Forzano, Francesca
    Great Ormond St Hosp Sick Children, Dept Clin Genet, London.
    Radojkovic, D.
    Univ Belgrade, Inst Mol Genet & Genet Engn, Lab Mol Genet, Belgrade.
    Rial-Sebbag, E.
    Univ Toulouse 3 Paul Sabatier, UMR 1027, INSERM, Fac Med, Toulouse.
    de Wert, G.
    Maastricht Univ, Dept Hlth Eth & Soc, Res Sch CAPHRI, Maastricht.; Maastricht Univ, Res Sch GROW, Maastricht.
    Borry, P.
    Katholieke Univ Leuven, Leuven Inst Genom & Soc, Dept Publ Hlth & Primary Care, Ctr Biomed Eth & Law, Leuven.
    Cornel, M. C.
    Vrije Univ Amsterdam Med Ctr, Dept Clin Genet, Sect Community Genet, Amsterdam.; Vrije Univ Amsterdam Med Ctr, EMGO Inst Hlth & Care Res, Amsterdam.
    One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 1, p. 1-11Article in journal (Refereed)
    Abstract [en]

    Gene editing, which allows for specific location(s) in the genome to be targeted and altered by deleting, adding or substituting nucleotides, is currently the subject of important academic and policy discussions. With the advent of efficient tools, such as CRISPR-Cas9, the plausibility of using gene editing safely in humans for either somatic or germ line gene editing is being considered seriously. Beyond safety issues, somatic gene editing in humans does raise ethical, legal and social issues (ELSI), however, it is suggested to be less challenging to existing ethical and legal frameworks; indeed somatic gene editing is already applied in (pre-) clinical trials. In contrast, the notion of altering the germ line or embryo such that alterations could be heritable in humans raises a large number of ELSI; it is currently debated whether it should even be allowed in the context of basic research. Even greater ELSI debates address the potential use of germ line or embryo gene editing for clinical purposes, which, at the moment is not being conducted and is prohibited in several jurisdictions. In the context of these ongoing debates surrounding gene editing, we present herein guidance to further discussion and investigation by highlighting three crucial areas that merit the most attention, time and resources at this stage in the responsible development and use of gene editing technologies: (1) conducting careful scientific research and disseminating results to build a solid evidence base; (2) conducting ethical, legal and social issues research; and (3) conducting meaningful stakeholder engagement, education and dialogue.

  • 154.
    Howick, Jeremy
    et al.
    University of Oxford.
    Ashley, Graham Kennedy
    Florida Atlantic University.
    Mebius, Alexander
    Philosophy and History, KTH, School of Architecture and the Built Environment (ABE), Philosophy and History of Technology, Philosophy.
    Philosophy of Evidence-Based Medicine2015In: Oxford Bibliographies in Philosophy / [ed] Duncan Pritchard, Oxford University Press, 2015Chapter in book (Refereed)
    Abstract [en]

    Since its introduction just over two decades ago, evidence-based medicine (EBM) has come to dominate medical practice, teaching, and policy. There are a growing number of textbooks, journals, and websites dedicated to EBM research, teaching, and evidence dissemination. EBM was most recently defined as a method that integrates best research evidence with clinical expertise and patient values and circumstances in the treatment of patients. There have been debates throughout the early 21st century about what counts as good research evidence between EBM proponents and philosophical critics and even within the EBM community itself. Similar controversy arises about the relative worth of patient values and clinical expertise (and how these can be integrated). EBM has also evolved in ways that have come under scrutiny. Specifically, policymakers have used EBM research methodology to increase the relative importance of clinical guidelines that some clinicians have argued are tyrannical. Philosophers have addressed all of these controversies, and with very few exceptions have been critical of EBM. In addition most philosophical attention has been on the epistemic role of Randomization and evidence hierarchies, with relatively little attention being paid to the role of Diagnosis, expertise, patient values, and Systematic Reviews within EBM.

  • 155.
    Howick, Jeremy
    et al.
    University of Oxford.
    Mebius, Alexander
    Philosophy and History, KTH, School of Architecture and the Built Environment (ABE), Philosophy and History of Technology, Philosophy. University of Oxford, UK.
    Randomized trials and observational studies: the current philosophical controversy2016In: Handbook of the Philosophy of Medicine / [ed] Schramme, Thomas and Steven Edwards, Springer, 2016, p. 873-886Chapter in book (Refereed)
    Abstract [en]

    The supposed superiority of randomized over non-randomized studies is used to justify claims about therapeutic effectiveness of medical interventions and also inclusion criteria for many systematic reviews of therapeutic interventions. However, the view that randomized trials provide better evidence has been challenged by philosophers of science. In addition, empirical evidence for average differences between randomized trials and observational studies (which we would expect if one method were superior) has proven difficult to find. This chapter reviews the controversy surrounding the relative merits of randomized trials and observational studies. It is concluded that while (well-conducted) observational can often provide the same level of evidential support as randomized trials, merits of (well-conducted) randomized trials warrant claims about their superiority, especially where results from the two methods are contradictory.

  • 156.
    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.
    Etiska aspekter på att rutinmässigt fråga om erfarenheter av våld i nära relationer.2010In: Att fråga om våldsutsatthet som en del av anamnesen., Uppsala: Edita Västra Aros , 2010, p. 95-103Chapter in book (Other academic)
  • 157.
    Höglund, Anna T
    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.
    Falkenström, Erica
    Stockholms universitet.
    The status of ethics in Swedish health care management:: a qualitative study2018In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 18, no 608, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Background

    By tradition, the Swedish health care system is based on a representative and parliamentary form of government. Recently, new management forms, inspired by market principles, have developed. The steering system is both national and regional, in that self-governing county councils are responsible for the financing and provision of health care in different regions. National and local documents regulating Swedish health care mention several ethical values, such as equity in health for the whole population and respect for autonomy and human dignity. It is therefore of interest to investigate the status of such ethical statements in Swedish health care management.

    Method

    The aim of the present study was to investigate perceptions of the status of ethics in the daily work of politicians, chief civil servants and Chief Executive Officers (CEOs) from care-giver organizations in the county council of Stockholm. A qualitative method was used, based on inductive content analysis of individual interviews with 13 health care managers.

    Results

    The content analysis resulted in four categories: Low status of ethics; Cost-effectiveness over ethics; Separation of ethics from management; and Lack of opportunities for ethical competence building. The informants described how they prioritized economic concerns over ethics and separated ethics from their daily work. They also expressed that they experienced that this development had been enforced by the marketization of the health care system. Further, they described how they lacked opportunities for ethical discussions, which could have helped develop their ethical competence.

    Conclusions

    In order to improve the status of ethics in health care management, ethical considerations and analyses must be integrated in the regular work tasks of politicians, chief civil servants and CEOs; such as decision-making, budgeting and reform work. Further, opportunities for ethical dialogues on a regular basis should be organized, in order to improve ethical competence on the management level. New steering forms, less focused upon market principles, might also be needed, in order to improve the status of ethics in the health care management organization.

  • 158.
    Inthorn, Julia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. University Medical Centre Göttingen.
    Fuzzy logic and preconceptional genetic carrier screening2014In: Archives for the Philosophy and History of Soft Computing, ISSN 2341-0183, Vol. 1, p. 1-10Article in journal (Refereed)
  • 159.
    Israelsson, Magnus
    et al.
    Mittuniversitet, Institutionen för socialt arbete.
    Nordlöf, Kerstin
    Örebro Universitet.
    Gerdner, Arne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. Research Platform of Social Work.
    European laws on compulsory commitment to care of persons suffering from substance use disorders or misuse problems – a comparative review from a human and civil rights perspective2015In: Substance Abuse Treatment, Prevention, and Policy, ISSN 1747-597X, E-ISSN 1747-597X, Vol. 10, p. 1-12, article id 34Article in journal (Refereed)
    Abstract [en]

    Background

    Laws on compulsory commitment to care (CCC) in mental health, social and criminal legislation for adult persons with alcohol and/or drug dependence or misuse problems are constructed to address different scenarios related to substance use disorders. This study examines how such CCC laws in European states vary in terms of legal rights, formal orders of decision and criteria for involuntary admission, and assesses whether three legal frameworks (criminal, mental and social law) equally well ensure human and civil rights.

    Methods

    Thirty-nine laws, from 38 countries, were analysed. Respondents replied in web-based questionnaires concerning a) legal rights afforded the persons with substance use problems during commitment proceedings, b) sources of formal application, c) instances for decision on admission, and d) whether or not 36 different criteria could function as grounds for decisions on CCC according to the law in question. Analysis of a-c were conducted in bivariate cross-tabulations. The 36 criteria for admission were sorted in criteria groups based on principal component analysis (PCA). To investigate whether legal rights, decision-making authorities or legal criteria may discriminate between types of law on CCC, discriminant analyses (DA) were conducted.

    Results

    There are few differences between the three types of law on CCC concerning legal rights afforded the individual. However, proper safeguards of the rights against unlawful detention seem still to be lacking in some CCC laws, regardless type of law. Courts are the decision-making body in 80 % of the laws, but this varies clearly between law types. Criteria for CCC also differ between types of law, i.e. concerning who should be treated: dependent offenders, persons with substance use problems with acting out or aggressive behaviors, or other vulnerable persons with alcohol or drug problems.

    Conclusion

    The study raises questions concerning whether various European CCC laws in relation to substance use disorder or misuse problems comply with international ratified conventions concerning human and civil rights. This, however, applies to all three types of law, i.e. social, mental health and criminal legislation. The main differences between law types concern legal criteria, reflecting different national priorities on implicit ambitions of CCC – for correction, for prevention, or for support to those in greatest need of care.

  • 160.
    Iversen, Clara
    et al.
    Uppsala Univ, Sweden.
    Broström, Anders
    Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Clinical Neurophysiology. School of Health and Welfare, Jönköping University, Jönköping, Sweden.
    Ulander, Martin
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Clinical Neurophysiology.
    Traffic risk work with sleepy patients: from rationality to practice2018In: Health, Risk and Society, ISSN 1369-8575, E-ISSN 1469-8331, Vol. 20, no 1-2, p. 23-42Article in journal (Refereed)
    Abstract [en]

    In this article, we aim to contribute to the emerging field of risk-work studies by examining the relationship between risk rationality and risk practices in nurses conversations with Obstructive Sleep Apnoea patients about traffic risks. Legislation in Sweden towards traffic risk involves clinicians making risk assessment of patients prone to falling asleep while driving. In contrast to an overall care rationale, this means that the health of the patient is not the only risk object in treatment consultations. However, guidelines on how to implement legislation are missing. To examine the practical reality of nurses traffic-risk work, we draw on an analysis of data from a Swedish study in 2015. This study included qualitative interviews with specialist nurses and video-recorded interactions between nurses and Obstructive Sleep Apnoea patients. We found that a lack of clarity in traffic-risk guidelines on how risk should be addressed was evident in both interview accounts and in observed practice. While nurses primarily accounted for risk work as treatment-relevant education, they practised risk work as interrogation. Patients also treated nurses inquiries as assessment - not education - by responding defensively. We conclude that while confusing risk work and treatment enables clinicians to treat patients as competent actors, it obscures the controlling aspects of traffic-risk questions for individual patients and downplays the implications of drowsy driving for general traffic safety.

  • 161.
    Ivert, Anna-Karin
    et al.
    Lund Univ, Skane Univ Hosp, Unit Social Epidemiol, Fac Med,CRC, Jan Waldenstroms St 35, S-20502 Malmo, Sweden.;Malmo Univ, Fac Hlth & Soc, Malmo, Sweden..
    Mulinari, Shai
    Lund Univ, Skane Univ Hosp, Unit Social Epidemiol, Fac Med,CRC, Jan Waldenstroms St 35, S-20502 Malmo, Sweden.;Lund Univ, Dept Sociol, Lund, Sweden..
    van Leeuwen, Willemijn
    Lund Univ, Skane Univ Hosp, Unit Social Epidemiol, Fac Med,CRC, Jan Waldenstroms St 35, S-20502 Malmo, Sweden.;Med Ctr Leeuwarden, Leeuwarden, Netherlands..
    Wagner, Philippe
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Lund Univ, Skane Univ Hosp, Unit Social Epidemiol, Fac Med,CRC, Jan Waldenstroms St 35, S-20502 Malmo, Sweden..
    Merlo, Juan
    Lund Univ, Skane Univ Hosp, Unit Social Epidemiol, Fac Med,CRC, Jan Waldenstroms St 35, S-20502 Malmo, Sweden..
    Appropriate assessment of ethnic differences in adolescent use of psychotropic medication: multilevel analysis of discriminatory accuracy2016In: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 21, no 6, p. 578-595Article in journal (Refereed)
    Abstract [en]

    Objective: In the present study, we used a multilevel approach to investigate the role of maternal country of birth (MCOB) in predicting adolescent use of psychotropic medication in Sweden.Design: Using the Swedish Medical Birth Register we identified all 428,314 adolescents born between 1987 and 1990 and who were residing in Sweden in the year they turned 18. We applied multilevel logistic regression analysis with adolescents (level 1) nested within MCOBs (level 2). Measures of association (odds ratio) and measures of variance (intra-class correlation (ICC)) were calculated, as well as the discriminatory accuracy by calculating the area under the Receiver Operator Characteristic (AU-ROC) curve.Results: In comparison with adolescents with Swedish-born mothers, adolescents with mothers born in upper-middle, lower-middle and low-income countries were less likely to use psychotropic medication. However, the variance between MCOBs was small (ICC = 2.5 in the final model) relative to the variation within MCOBs. This was confirmed by an AU-ROC value of 0.598.Conclusions: Even though we found associations between MCOB and adolescent use of psychotropic medication, the small ICC and AU-ROC indicate that MCOB appears to be an inaccurate context for discriminating adolescent use of psychotropic medication in Sweden.

  • 162.
    Jebari, Karim A.
    KTH, School of Architecture and the Built Environment (ABE), Philosophy and History of Technology, Philosophy.
    Brain Machine Interface and Human Enhancement - An Ethical Review2013In: Neuroethics, ISSN 1874-5490, E-ISSN 1874-5504, Vol. 6, no 3, p. 617-625Article, review/survey (Refereed)
    Abstract [en]

    Brain machine interface (BMI) technology makes direct communication between the brain and a machine possible by means of electrodes. This paper reviews the existing and emerging technologies in this field and offers a systematic inquiry into the relevant ethical problems that are likely to emerge in the following decades.

  • 163.
    Jeppsson, Sofia
    Umeå University, Faculty of Medicine.
    Obesity and Obligation2015In: Kennedy Institute of Ethics journal (Print), ISSN 1054-6863, E-ISSN 1086-3249, Vol. 25, no 1, p. 89-110Article in journal (Refereed)
    Abstract [en]

    The belief that obese people ought to lose weight and keep it off is widespread, and has a profound negative impact on the lives of the obese. I argue in this paper that most obese people have no such obligation, even if obesity is bad, and caused by calorie input exceeding output. Obese people do not have an obligation to achieve long-term weight loss if this is impossible for them, is worse than the alternative, or requires such an enormous effort in relation to what stands to be gained that this option is supererogatory rather than obligatory. It is highly plausible that most obese people fall into one of these three groups. Politicians may still have obligations to fight obesity, but they ought to do so through progressive politics rather than blaming and shaming.

  • 164.
    Johansson, Eva
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hovelius, Birgitta
    Kapitel 1. Begrepp och teorier.2004In: Kropp och genus i medicinen, Lund: Studentlitteratur , 2004, 1, p. 35-45Chapter in book (Other academic)
  • 165.
    Johnsson, Linus
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research2016In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 7, p. 471-478Article in journal (Refereed)
    Abstract [en]

    Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.

  • 166.
    Johnsson, Linus
    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.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska Institutet, Stockholm.
    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.
    Making researchers moral: Why trustworthiness requires more than ethics guidelines and review2014In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Vol. 10, no 1, p. 29-46Article in journal (Refereed)
    Abstract [en]

    Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing.

  • 167.
    Johnsson, Linus
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Nordgren, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning i Sörmland (CKFD). Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    How general practitioners decide on maxims of action in response to demands from conflicting sets of norms: a grounded theory study2019In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 20, article id 33Article in journal (Refereed)
    Abstract [en]

    Background: The work of general practitioners (GPs) is infused by norms from several movements, of which evidence based medicine, patient-centredness, and virtue ethics are some of the most influential. Their precepts are not clearly reconcilable, and structural factors may limit their application. In this paper, we develop a conceptual framework that explains how GPs respond, across different fields of interaction in their daily work, to the pressure exerted by divergent norms.

    Methods: Data was generated from unstructured interviews with and observations of sixteen Swedish GPs (who have by definition more than five years of experience after license to practice) and family medicine residents (with less than five years of experience) between 2015 and 2017. Straussian Grounded Theory was used for analysis.

    Results: We found that GPs’ maxims of action can be characterised in terms of dichotomous responses to demands from four distinct sets of norms, or “voices”: the situation, the self, the system, and the profession. From the interactions between these voices emerge sixteen clusters of maxims of action. Based on the common features of the maxims in each cluster, we have developed a conceptual framework that appears to be rich enough to capture the meaning of the ethical decisions that GPs make in their daily work, yet has a high enough level of abstraction to be helpful when discussing the factors that influence those decisions.

    Conclusions: Our four-dimensional model of GPs' responses to norms is a first step toward a middle-range theory of quality from GPs' perspective. It brings out the complexity of their practice, reveals tensions that easily remain invisible in more concrete accounts of their actions, and aids the transferability of substantive theories on GPs' ethical decision making. By explaining the nature of the ethical conflicts that they experience, we provide some clues as to why efforts to improve quality by imposing additional norms on GPs may meet with varying degrees of success.

  • 168.
    Jonasson, Lise-Lotte
    et al.
    Univ Boras, Sweden.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Univ Boras, Sweden.
    Bremer, Anders
    Univ Boras, Sweden; Linnaeus Univ, Sweden.
    Managers experiences of ethical problems in municipal elderly care: a qualitative study of written reflections as part of leadership training2019In: Journal of Healthcare Leadership, ISSN 1179-3201, E-ISSN 1179-3201, Vol. 11, p. 63-74Article in journal (Refereed)
    Abstract [en]

    Background: Managers in elderly care have a complex ethical responsibility to address the needs and preferences of older persons while balancing the conflicting interests and requirements of relatives demands and nursing staffs work environment. In addition, managers must consider laws, guidelines, and organizational conditions that can cause ethical problems and dilemmas that need to be resolved. However, few studies have focused on the role of health care managers in the context of how they relate to and deal with ethical conflicts. Therefore, the aim of this study was to describe ethical problems experienced by managers in elderly care. Methods: We used a descriptive, interpretative design to analyze textual data from two examinations in leadership courses for managers in elderly care. A simple random selection of 100 out of 345 written exams was made to obtain a manageable amount of data. The data consisted of approximately 300 pages of single-spaced written text. Thematic analysis was used to evaluate the data. Results: The results show that managers perceive the central ethical conflicts relate to the older persons autonomy and values versus their needs and the values of the staff. Additionally, ethical dilemmas arise in relation to the relatives perspective of their loved ones needs and preferences. Legislations, guidelines, and a lack of resources create difficulties when managers perceive these factors as conflicting with the care needs of older persons. Conclusion: Managers in elderly care experience ethical conflicts that arise as unavoidable and perennial values conflicts, poorly substantiated values, and problematic organizational conditions. Structured approaches for identifying, reflecting on, and assessing ethical problems in the organization should therefore be implemented.

  • 169.
    Jonasson, Lise-Lotte
    et al.
    University of Borås, Sweden.
    Sandman, Lars
    University of Borås, Sweden;Linköping university, Sweden.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. University of Borås, Sweden.
    Managers’ experiences of ethical problems in municipal elderly care: a qualitative study of written reflections as part of leadership training2019In: Journal of Healthcare Leadership, ISSN 1179-3201, E-ISSN 1179-3201, Vol. 11, p. 63-74Article in journal (Refereed)
    Abstract [en]

    Background: Managers in elderly care have a complex ethical responsibility to address the needs and preferences of older persons while balancing the conflicting interests and requirements of relatives’ demands and nursing staff’s work environment. In addition, managers must consider laws, guidelines, and organizational conditions that can cause ethical problems and dilemmas that need to be resolved. However, few studies have focused on the role of health care managers in the context of how they relate to and deal with ethical conflicts. Therefore, the aim of this study was to describe ethical problems experienced by managers in elderly care. Methods: We used a descriptive, interpretative design to analyze textual data from two examinations in leadership courses for managers in elderly care. A simple random selection of 100 out of 345 written exams was made to obtain a manageable amount of data. The data consisted of approximately 300 pages of single-spaced written text. Thematic analysis was used to evaluate the data. Results: The results show that managers perceive the central ethical conflicts relate to the older persons’ autonomy and values versus their needs and the values of the staff. Additionally, ethical dilemmas arise in relation to the relatives’ perspective of their loved one’s needs and preferences. Legislations, guidelines, and a lack of resources create difficulties when managers perceive these factors as conflicting with the care needs of older persons. Conclusion: Managers in elderly care experience ethical conflicts that arise as unavoidable and perennial values conflicts, poorly substantiated values, and problematic organizational conditions. Structured approaches for identifying, reflecting on, and assessing ethical problems in the organization should therefore be implemented.

  • 170. Jónssson, Jón Jóhannes
    Genterapi vid MPS och cystisk fibros1996In: Genterapi på människa: Vad kan vi? Vad bör vi?, Köpenhamn: Nordisk ministerråd , 1996Chapter in book (Refereed)
  • 171. Kalokairinou, L
    et al.
    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.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Fisher, E
    Flatscher-Thöni, M
    Hartlev, M
    van Hellemondt, R
    Juškevičius, J
    Kapelenska-Pregowska, J
    Kováč, P
    Lovrečić, L
    Nys, H
    de Paor, A
    Phillips, A
    Prudil, L
    Rial-Sebbag, E
    Romeo Casabona, CM
    Sándor, J
    Schuster, A
    Soini, S
    Søvig, KH
    Stoffel, D
    Titma, T
    Trokanas, R
    Borry, P
    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 117-132Article, review/survey (Refereed)
    Abstract [en]

    Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights.

  • 172.
    Kalokairinou, Louiza
    et al.
    Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Leuven, Belgium..
    Borry, Pascal
    Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Leuven, 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.
    Regulating the advertising of genetic tests in Europe: a balancing act2017In: Journal of Medical Genetics, ISSN 0022-2593, E-ISSN 1468-6244, Vol. 54, no 10, p. 651-656Article in journal (Refereed)
    Abstract [en]

    Direct-to-consumer (DTC) genetic tests (GT) have provoked criticism over their potential adverse impact on public health. The European Parliament called for a ban on DTC advertising of GT during the debate for the adoption of a European Regulation on in vitro diagnostic medical devices. This proposal, however, was not ultimately retained in the final text. Instead, the regulation includes an article prohibiting misleading claims for this kind of advertising. These two different approaches raise questions about the optimal degree of regulation. Herein, we provide an overview of the ways GT have been advertised and related ethical issues. Subsequently, the laws regulating the advertising of GT at the European Union and national level are examined. Finally, recent regulatory developments are discussed.

  • 173.
    Kane, Bridget
    et al.
    Karlstad University, Faculty of Arts and Social Sciences (starting 2013), Karlstad Business School (from 2013).
    Luz, Saturnino
    Univ Edinburgh, Edinburgh, Midlothian, Scotland.
    Trust, Ethics and Access: Challenges in studying the work of Multidisciplinary Medical Teams2017In: 2017 IEEE 30Th International Symposium On Computer-Based Medical Systems (CBMS) / [ed] Bamidis, PD; Konstantinidis, ST; Rodrigues, PP, New York: IEEE, 2017, p. 527-528Chapter in book (Refereed)
    Abstract [en]

    This paper highlights the challenges for researchers when undertaking research on multidisciplinary medical teams (MDTs) in real-world healthcare settings, and suggests ways in which these challenges may be addressed.

  • 174. Kaye, Jane
    et al.
    Curren, Liam
    Anderson, Nick
    Edwards, Kelly
    Fullerton, Stephanie M
    Kanellopoulou, Nadja
    Lund, David
    MacArthur, Daniel G
    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.
    Shepherd, James
    Taylor, Patrick L
    Terry, Sharon F
    Winter, Stefan F
    From patients to partners: participant-centric initiatives in biomedical research.2012In: Nature reviews genetics, ISSN 1471-0056, E-ISSN 1471-0064, Vol. 13, no 5, p. 371-6Article in journal (Refereed)
    Abstract [en]

    Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.

  • 175.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Genetic risk and value2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 222-235Article in journal (Refereed)
    Abstract [en]

    A conceptual truth about risks is that they involve a possible and future adverse effect or a negative value of some kind. The genetic risks that individuals may face in the health care setting differ in some crucial respects to other kind of risks. The aims of this paper are to analyse the notion of value in the context of genetic risk in the setting of health care, and to suggest a conception of the evaluative aspect of genetic risk that is fruitful for genetic risk information. Two influential and relevant approaches to value, preferentialism and the capability approach, are discussed in the light of certain distinctive features of genetic risk and a third, a sensibility theory of value is suggested. According to this view, the concept of risk is a so-called ‘thick’ evaluative concept that has both a world-guiding function as well as an action-guiding or normative function. It is argued that this provides a more promising way to think about genetic risks in the clinical setting.

  • 176.
    Klingstrom, Tomas
    et al.
    Swedish Univ Agr Sci, SLU Global Bioinformat Ctr, Dept Anim Breeding & Genet, Ulls Vag 26, Uppsala, Sweden..
    Mendy, Maimuna
    Int Agcy Res Canc, Lyon, France..
    Meunier, Dominique
    Int Agcy Res Canc, Lyon, France..
    Berger, Anouk
    Int Agcy Res Canc, Lyon, France..
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Christoffels, Alan
    Univ Western Cape, South African Natl Bioinformat Inst, Bellville, South Africa..
    Bendou, Hocine
    Univ Western Cape, South African Natl Bioinformat Inst, Bellville, South Africa..
    Swanepoel, Carmen
    Smit, Lemoene
    BikaLabs, Western Cape, South Africa..
    Mckellar-Basset, Campbell
    BikaLabs, Western Cape, South Africa..
    Bongcam-Rudloff, Erik
    Soderberg, Jonas
    Merino-Martinez, Roxana
    Karolinska Inst, Med Epidemiol & Biostat, Stockholm, Sweden..
    Amatya, Suyesh
    Karolinska Inst, Med Epidemiol & Biostat, Stockholm, Sweden..
    Kihara, Absolomon
    Int Livestock Res Inst, Nairobi, Kenya..
    Kemp, Steve
    Int Livestock Res Inst, Nairobi, Kenya..
    Reihs, Robert
    Inst Pathol, Med Res Ctr, Graz, Austria..
    Mueller, Heimo
    Inst Pathol, Med Res Ctr, Graz, Austria..
    Supporting the Development of Biobanks in Low and Medium Income Countries2016In: 2016 IST-AFRICA WEEK CONFERENCE / [ed] Paul Cunningham and Miriam Cunningham, 2016, article id 236Conference paper (Refereed)
    Abstract [en]

    Biobanks are an organized collection of biological material and associated data. They are a fundamental resource for life science research and contribute to the development of pharmaceutical drugs, diagnostic markers and to a deeper understanding of the genetics that regulate the development of all life on earth. Biobanks are well established in High Income Countries (HIC) and are rapidly emerging in Low and Middle Income Countries (LMIC). Surveys among biobanks operating in a LMIC setting indicate that limited resources and short term funding tied to specific projects threaten the sustainability of the biobanks. Fit-for-purpose biobanks targeting major societal challenges such as HIV and Malaria provide an excellent basis for integrating biobanks with the available research communities in LMIC regions. But to become sustainable for the future it is important that biobanks become an integrated part of local research communities. To achieve this, the cost of operating biobanks must be lowered, templates must be developed to support local ethics committees and researchers must be given the opportunity to build experience in successfully operating biobank based research projects. The B3Africa consortium is based on these conclusions and set up to support biobank based research by creating a cost efficient Laboratory Information Management System (LIMS) for developing biobanks and also contribute to the training and capacity building in the local research community. The technical platform called the eB3Kit is open source and consists of a LIMS and a bioinformatics module based on the eBiokit that allow researchers to take control over the analysis of their own data. Along with the technical platform the consortium will also contribute training and support for the associated infrastructures necessary to regulate the ethical and legal implications of biobank based research.

  • 177.
    Klingström, Tomas
    et al.
    SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
    Bongcam Rudloff, Erik
    SLU-Global Bioinformatics Centre, Department of Animal Breeding and Genetics, Swedish University of Agricultural Sciences, Sweden..
    Reichel, Jane
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Legal & ethical compliance when sharing biospecimen2018In: Briefings in Functional Genomics & Proteomics, ISSN 2041-2649, E-ISSN 2041-2657, Vol. 17, no 1, p. 1-7Article, review/survey (Refereed)
    Abstract [en]

    When obtaining samples from biobanks, resolving ethical and legal concerns is a time-consuming task where researchers need to balance the needs of privacy, trust and scientific progress. The Biobanking and Biomolecular Resources Research Infrastructure-large Prospective Cohorts project has resolved numerous such issues through intense ommunication between involved researchers and experts in its mission to unite large  rospective study sets in Europe. To facilitate efficient communication, it is useful for onexperts to have an at least basic understanding of the regulatory systemformanaging biological samples. Laws regulating research oversight are based on national law and normally share core principles founded on international charters. In interview studies among donors, chief concerns are privacy, efficient sample utilization and access to information generated fromtheir samples. Despite a lack of clear evidence regarding which concern takes precedence, scientific as well as public discourse has largely focused on privacy concerns and the right of donors to control the usage of their samples. It is therefore important to  roactively deal with ethical and legal issues to avoid complications that delay or prevent samples from being accessed. To help biobank professionals avoid making unnecessary mistakes, we have developed this basic primer covering the relationship between ethics and law, the concept of informed consent and considerations for returning findings to donors.

  • 178. Knoppers, Bartha Maria
    et al.
    Avard, Denise
    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.
    Direct-to-consumer genetic testing: driving choice?2010In: Expert Review of Molecular Diagnostics, ISSN 1473-7159, E-ISSN 1744-8352, Vol. 10, no 8, p. 965-8Article in journal (Refereed)
  • 179. Krupic, Ferid
    et al.
    Sayed-Noor, Arkan S.
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Fatahi, Nabi
    The impact of knowledge and religion on organ donation as seen by immigrants in Sweden2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 4, p. 687-694Article in journal (Refereed)
    Abstract [en]

    Background: Transplantation of organs is one of the most successful medical advances of the past 60 years and transplantation is the treatment of choice for severe organ failure worldwide. Despite this situation, and the general acknowledgement of organ donation as a global priority, demand for organs outstrips supply in virtually every country in the world. Aim: The aim of the study was to elucidate factors that influence immigrant's decisions regarding organ donation. Methods: Data were collected through three group interviews using open-ended questions and qualitative content analysis. 32 participants, 16 men and 16 women from Bosnia and Herzegovina, Somalia, Lebanon and Kosovo participated in focus group interviews (FGI). Results: Analysis of the collected data resulted in two main categories: Information about organ donation' and Religious aspects of organ donation and a number of subcategories'. Some of the influencing factors concerning organ donation were mainly related to limited information from society as well as limited information from healthcare professionals. Religious aspects, fear and prejudices about organ donation were other factors that mentioned by participants as hamper regarding organ donation. Conclusion: In order to improve immigrants' attitude towards organ donation, information about this issue and identification of the hampering factors, particularly culturally related factors such as the religious aspect, is essential. In this context, different intervention studies are needed to increase monitories groups' attitude towards organ donations.

  • 180.
    Kubai, Anne
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, The Hugo Valentin Centre. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology, Church and Mission studies, Science of Mission.
    Ahlberg, Beth Maina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, International Maternal and Child Health (IMCH).
    Making and unmaking ethnicities in the Rwandan context: implication for gender-based violence, health, and wellbeing of women2013In: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 18, no 5, p. 469-482Article in journal (Refereed)
    Abstract [en]

    Objectives

    To examine ethnicity and gender violence in Rwanda from cultural and historical perspectives and explore the encounters between cultural beliefs and practices and the new gender equality policy and programs and the implications of the particular encounters to the health of women.

    Design

    The study is a qualitative drawing from the growing range of interactive approaches and methods within an ethnographic framework of the research design. Twenty individual interviews, six focus group discussions and two 'community mobilization' dialogs were conducted.

    Results

    Violence has continued and there is a conflict between cultural tradition, the de-ethnicization, and gender equality policies. Some of the gender violence preventive programs are influenced by the ethos of the traditional norms, and therefore unwittingly perpetuate gender-based violence.

    Conclusions

    In spite of the progress that Rwanda has made in political empowerment of women, it still seems a long way before real gender equality is achieved. It seems that women's empowerment is not only just an opportunity for political participation but also this is important. It is also about the capacity to make effective choices and to translate them into desired actions and outcomes, unfettered by cultural sanctions. Universalised, top-down gender policy programs have not furnished all women with the necessary capacity to make decisions that affect their traditionally all important reproductive functions; to challenge the embedded gender imbalance; and to strive for a holistic wellbeing of their families, where they play a central role. Indeed, some of the policies could have negative implications to the health of women, in particular, with sexually transmitted infections, including HIV and AIDS.

  • 181.
    Kuhlau, Frida
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Responsible Conduct in Dual Use Research: Towards an Ethic of Deliberation in the Life Sciences2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Life scientists have increasingly been asked to incorporate a dual use responsibility in their research conduct. In this thesis, different aspects of what constitutes a reasonable responsibility in terms of avoiding harmful misuse of research for biological weapon purposes have been explored.

    The first study investigated the claim that scientists have a dual use responsibility, and also outlined some of its possible content. Criteria for what may constitute preventable harm were used to analyze some proposed obligations in the field, and it was concluded that reasonable obligations include: e.g. considering the potential negative implications of one’s research and reporting activities of concern. In the second study, the conditions for a Precautionary Principle (PP) were explored and applied to the dual use research context. The study found that the main conditions of the PP frequently appear in present discussions and formulations of life scientists’ responsibility. It was also concluded that the PP is applicable to the dual use field and that it is meaningful and useful as a normatively guiding principle. The third study suggested an ethics of dissemination, based on the assumption that scientists have a responsibility to occasionally constrain the dispersion of their research findings. Three core aspects were proposed for an ethics of dual use dissemination. Additionally, to help scientists understand when constraints may be justified, three corresponding conditions for their application were suggested. In the fourth study, the concept of ethical competence was introduced and explored within a dual use context. It was concluded that competence-building is important in the nurturing of individual responsibility and, subsequently, in achieving a culture of dual use responsibility in the life sciences.

    Finally, the discussion on ethical competence was included in a proposed ethic of deliberation, in which various stakeholders in the dual use debate are conceived to participate in communicative processes. It was argued that spaces for deliberative activities should be institutionalized by the scientific community to ensure structural opportunities for individuals to both assume responsibility and share it. Moreover, it was argued that deliberation can constitute a cornerstone of responsible dual use governance.

  • 182.
    Kuhlau, Frida
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Höglund, Anna T
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    The ethics of disseminating dual use knowledge2013In: Research Ethics, ISSN 1747-0161, Vol. 9, no 1, p. 6-19Article in journal (Refereed)
    Abstract [en]

    In 2011, for the first time ever, two scientific journals were asked not to publish research papers in full detail. The research in question was on the H5N1 influenza virus (bird flu), and the concern was that the expected public health benefits of disseminating the findings did not outweigh the potential harm should the knowledge be misused for malicious purposes. This constraint raises important ethical concerns as it collides with scientific freedom and openness. In this article, we argue that constraining the dissemination of dual-use knowledge can in certain cases be justified because, for example: scientists have a responsibility for potentially harmful consequences of their research; the public need not always know of all scientific discoveries; uncertainty about the risks of harm may warrant precaution; and expected benefits do not always outweigh potential harm. However, the constraints in question are not absolute but can be both temporary and partial. We propose three core aspects for an ethics of dual-use dissemination: dual-use awareness, precaution, and acknowledgment of conflicting values. Additionally, to help scientists understand when constraints on dissemination may be justified we suggest three corresponding conditions that prompt scientists to recognize dual-use material or research, consider the potential impact of dual-use knowledge dissemination, and acknowledge and respond to external dissemination concerns.

  • 183. Larrivee, Denis
    et al.
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Science and Society Unit, Biology and Molecular Genetics Institute, Ariano Irpino, Italy.
    Realigning the Neural Paradigm for Death2019In: Journal of Bioethical Inquiry, ISSN 1176-7529, E-ISSN 1872-4353, Vol. 16, no 2, p. 259-277Article in journal (Refereed)
    Abstract [en]

    Whole brain failure constitutes the diagnostic criterion for death determination in most clinical settings across the globe. Yet the conceptual foundation for its adoption was slow to emerge, has evoked extensive scientific debate since inception, underwent policy revision, and remains contentious in praxis even today. Complications result from the need to relate a unitary construal of the death event with an adequate account of organismal integration and that of the human organism in particular. Advances in the neuroscience of higher human faculties, such as the self, personal identity, and consciousness, and dynamical philosophy of science accounts, however, are yielding a portrait of higher order global integration shared between body and brain. Such conceptual models of integration challenge a praxis relying exclusively on a neurological criterion for death.

  • 184.
    Lerner, Henrik
    Linköpings universitet.
    Transeminarium om eutanasi för människa och av djur2010In: Svensk Veterinärtidning, Vol. 62, no 10, p. 23-25Article in journal (Other academic)
  • 185.
    Lerner, Henrik
    et al.
    Linköpings universitet.
    Lindblad, Anna
    Karolinska institutet.
    Algers, Bo
    Sveriges lantbruksuniversitet.
    Lynoe, Niels
    Karolinska institutet.
    Veterinary surgeons' attitudes towards physician-assisted suicide: an empirical study of Swedish experts on euthanasia2011In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 37, no 5, p. 295-298Article in journal (Refereed)
    Abstract [en]

    Aim: To examine the hypothesis that knowledge about physician-assisted suicide (PAS) and euthanasia is associated with a more restrictive attitude towards PAS.

    Design: A questionnaire about attitudes towards PAS, including prioritisation of arguments pro and contra, was sent to Swedish veterinary surgeons. The results were compared with those from similar surveys of attitudes among the general public and physicians.

    Participants: All veterinary surgeons who were members of the Swedish Veterinary Association and had provided an email address (n=2421).

    Main outcome measures: Similarities or differences in response pattern between veterinary surgeons, physicians and the general public.

    Results: The response pattern among veterinary surgeons and the general public was almost similar in all relevant aspects. Of the veterinarians 75% (95% CI 72% to 78%) were in favour of PAS, compared with 73% (95% CI 69% to 77%) among the general public. Only 10% (95% CI 5% to 15%) of the veterinary surgeons were against PAS, compared with 12% (95% CI 5% to 19%) among the general public. Finally, 15% (95% CI 10% to 21%) of veterinarians were undecided, compared with 15% (95% CI 8% to 22%) among the general public. Physicians had a more restrictive attitude to PAS than the general public.

    Conclusions: Since veterinary surgeons have frequent practical experience of euthanasia in animals, they do have knowledge about what euthanasia really is. Veterinary surgeons and the general public had an almost similar response pattern. Accordingly it seems difficult to maintain that knowledge about euthanasia is unambiguously associated with a restrictive attitude towards PAS.

  • 186.
    Lerner, Henrik
    et al.
    Linköpings universitet.
    Wendel, Lotta
    Om möss och människor: försöksobjektens rättsliga ställning i human- och djurlagstiftningen2008In: Djuren är väl också människor: en antologi om hälsa och välbefinnande i djurens och människornas värld / [ed] Bo Algers, Stefan Gunnarsson, Lennart Nordenfeldt, Skara: Institutionen för husdjurens miljö och hälsa, Sveriges lantbruksuniversitet , 2008, p. 93-101Chapter in book (Other academic)
  • 187.
    Lilja Andersson, Petra
    et al.
    Lunds universitet.
    Edberg, Anna-Karin
    Kristianstad University, School of Health and Society. Kristianstad University, Research Platform for Collaboration for Health.
    Ethical aspects of undergoing a predictive testing for Huntington's disease2014Conference paper (Refereed)
  • 188.
    Lilja Andersson, Petra
    et al.
    Lund University.
    Petersén, Åsa
    Lund University.
    Graff, Caroline
    Karolinska Institutet, Stockholm.
    Edberg, Anna-Karin
    Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap II. Kristianstad University, Research Platform for Collaboration for Health.
    Ethical aspects of a predictive test for Huntington’s Disease: a long term perspective2016In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 23, no 5, p. 565-575Article in journal (Refereed)
    Abstract [en]

    Background: A predictive genetic test for Huntington’s disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families’ experiences.

    Objectives: The aim of the study was to describe a young couple’s long-term experiences and the consequences of a predictive test for Huntington’s disease.

    Research design: A descriptive case study design was used with a longitudinal narrative life history approach.

    Participants and research context: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington’s disease.

    Ethical considerations: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee.

    Findings: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce.

    Discussion: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families’ everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life.

    Conclusion: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test.

  • 189.
    Lindström, Pål
    et al.
    Susano Rehab AB, Malmö, Sweden.
    Lemming, Dag
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Lantz Lenander, Eva
    Susano Rehab AB, Malmö, Sweden.
    Jönsson, Rolf
    Apport Rehab, Kristianstad, Sweden.
    Sverige behöver riktlinjer för oberoende medicinska utredningar [Sweden needs guidelines for independent medical evaluations]2015In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, article id DHRZArticle in journal (Other academic)
    Abstract [sv]

    En oberoende medicinsk utredning kräver ett tydligt etiskt ställningstagande från utövaren, anser Pål Lindström och medförfattare. De föreslår tydliga etiska riktlinjer baserade på internationell standard, anpassade för svenska förhållanden.

  • 190.
    Lindwall, Lillemor
    et al.
    Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
    Boussaid, Lena
    School of Health, Care and Social Welfare, Mälardalen University.
    Kulzer, Sonja
    School of Health, Care and Social Welfare, Mälardalen University, Västerås.
    Wigerblad, Åse
    School of Health, Care and Social Welfare, Mälardalen University, Eskilstuna.
    Patient dignity in psychiatric nursing practice2012In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 19, no 7, p. 569-576Article in journal (Refereed)
    Abstract [en]

    Professional nurses have an ethical responsibility to protect and preserve the patients' dignity. The aim of this study was to describe how nurses experienced incidents relating to patients' dignity in a psychiatric nursing practice. A hermeneutic approach was used and data were collected using the critical incident technique. Data included 77 written critical incidents, which were interpreted by using a hermeneutic text interpretation. The findings show preserved dignity – caregivers have the courage to be present, and offended dignity – caregivers create powerlessness taken away by the patient. These findings show that patients' dignity in a psychiatric nursing practice can be preserved when caregivers act on their ethical responsibility. When patients' dignity is offended, the caregiver has become an inner value conflict, something they have been a part of against their own will.

  • 191. Luna, Florencia
    et al.
    Salles, Arleen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Moral Incoherence and hidden Battles: Stem Cell Research in Argentina2010In: Developing World Bioethics, ISSN 1471-8731, E-ISSN 1471-8847, Vol. 10, no 3, p. 120-128Article in journal (Refereed)
    Abstract [en]

    In this article, the authors focus on Argentina's activity in the developing field of regenerative medicine, specifically stem cell research. They take as a starting point a recent article by Shawn Harmon (published in this journal) who argues that attempts to regulate the practice in Argentina are morally incoherent. The authors try to show first, that there is no such 'attempt to legislate' on stem cell research in Argentina and this is due to a number of reasons that they explain. Second, by examining the role played by different values, conflicting legal and moral views, and the influence of various actors, they attempt to show that the legislative silence regarding stem cell research may not necessarily be a manifestation of a legal/moral disconnection but rather a survival strategy for navigating the long and heated battle on the moral status of the embryo and the kind of treatment it deserves.

  • 192.
    Lundberg, Kristina
    et al.
    Jonkoping Univ, Sweden; Univ Boras, Sweden.
    Kjellstrom, Sofia
    Jonkoping Univ, Sweden.
    Sandman, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Univ Boras, Sweden.
    Dual loyalties: Everyday ethical problems of registered nurses and physicians in combat zones2019In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 26, no 2, p. 480-495Article in journal (Refereed)
    Abstract [en]

    Background: When healthcare personnel take part in military operations in combat zones, they experience ethical problems related to dual loyalties, that is, when they find themselves torn between expectations of doing caring and military tasks, respectively. Aim: This article aims to describe how Swedish healthcare personnel reason concerning everyday ethical problems related to dual loyalties between care and military tasks when undertaking healthcare in combat zones. Design: Abductive qualitative design. Participants and research context: Individual interviews with 15 registered nurses and physicians assigned for a military operation in Mali. Ethical considerations: The participants signed up voluntarily, and requirements for informed consent and confidentiality were met. The research was approved by the Regional Ethics Review Board in Gothenburg (D no. 816-14; 24 November 2014). Findings: Three main categories emerged: reasons for not undertaking combat duties, reasons for undertaking combat duties and restricted loyalty to military duties, and 14 subcategories. Reasons for not undertaking combat duties were that it was not in their role, not according to ethical codes or humanitarian law or a breach towards patients. Reasons for undertaking combat duties were that humanitarian law does not apply or has to be treated pragmatically or that it is a case of force protection. Shortage of resources and competence were reasons for both doing and not doing military tasks. Under some circumstances, they could imagine undertaking military tasks: when under threat, if unseen or if not needed for healthcare duties. Discussion/conclusion: These discrepant views suggest a lack of a common view on what is ethically acceptable or not, and therefore we suggest further normative discussion on how these everyday ethical problems should be interpreted in the light of humanitarian law and ethical codes of healthcare personnel and following this, further training in ethical reflection before going on military operations.

  • 193.
    Lundälv, Jörgen
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Blogga tryggt: nya medier i tjänsten2014Book (Other (popular science, discussion, etc.))
    Abstract [sv]

    Kommunikation och relation är två väsentliga begrepp som alla människor måsteförhålla sig till. Den goda kommunikationen mellan två människor handlar blandannat om ansvar och om vad vi är skyldiga varandra. Professionella yrkesutövareinom människovårdande yrken har ofta ett behov av att berätta om möten och upplevelser.Men att använda nya medier i tjänsten för att uttrycka åsikter och ventileraattityder kräver eftertanke eftersom det finns risk för att det som publiceras inte äretiskt genomtänkt. Utgången kan bli tragisk för de inblandade i flera avseenden. Attanvända sociala medier på nätet kräver kunskap och insikt. Medvetenhet, respekt ochett etiskt förhållningssätt är därför viktigt hos den som twittrar eller bloggar på nätet.Boken innehåller robusta råd och många exempel från verkligheten som handlarom att använda nya medier i tjänsten. Den är tänkt att ha i beredskap när du bästbehöver råd i etiska, juridiska och praktiska situationer.Blogga tryggt vänder sig till alla universitets- och högskolestudenter vid såväl grundsomspecialistutbildningar inom en rad yrkeskategorierinom hälso- och sjukvårdenmen även till utbildningar för sociala och psykologiska professioner i Sverige. Bokenär i hög grad intressant också för såväl personal som för förtroendevalda inom flerahälso- och samhällsområden.

  • 194. Lynoe, Niels
    et al.
    Leijonhufvud, Madeleine
    Stockholm University, Faculty of Law, Department of Law.
    Police in an intensive care unit: what can happen?2013In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 39, no 12, p. 772-775Article in journal (Refereed)
    Abstract [en]

    During spring 2009 a Swedish senior paediatric intensivist and associate professor was detained and later prosecuted for mercy-killing a child with severe brain damage. The intensivist was accused of having used high doses of thiopental after having withdrawn life-sustaining treatment when the child was imminently dying. After more than 2.5years of investigation the physician was acquitted by the Stockholm City Court. The court additionally stated that the physician had provided good end-of-life care. Since the trial it has become evident that the accusation was based on a problematic medicolegal report. Nevertheless, the event has had severe negative consequences for the physician personally and professionally, and probably also, in general, for patients in the final stage of life. This case illustrates, together with other cases, that there is a lack of correspondence between ethical soft law/healthcare law and the Penal Code. To optimise medical practice we suggest that the criminal law be carefully examined and if possible changed. Furthermore, we suggest a peer-review system for assessing medicolegal reports in cases of suspected homicide.

  • 195. Lynöe, Niels
    et al.
    Wessel, Maja
    Olsson, Daniel
    Alexanderson, Kristina
    Tännsjö, Torbjörn
    Stockholm University, Faculty of Humanities, Department of Philosophy.
    Juth, Niklas
    Duelling with doctors, restoring honour and avoiding shame?: A cross-sectional study of sick-listed patients' experiences of negative healthcare encounters with special reference to feeling wronged and shame2013In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 39, no 10, p. 654-657Article in journal (Refereed)
    Abstract [en]

    Aims: The aim of this study was to examine if it is plausible to interpret the appearance of shame in a Swedish healthcare setting as a reaction to having one's honour wronged.

    Methods: Using a questionnaire, we studied answers from a sample of long-term sick-listed patients who had experienced negative encounters (n=1628) and of these 64% also felt wronged. We used feeling wronged to examine emotional reactions such as feeling ashamed and made the assumption that feeling shame could be associated with having one's honour wronged. In statistical analyses relative risks (RRs) were computed, adjusting for age, sex, disease-labelling, educational levels, as well as their 95% CI.

    Results: Approximately half of those who had been wronged stated that they also felt shame and of those who felt shame, 93% (CI 91 to 95) felt that they had been wronged. The RR was 4.5 (CI 3.0 to 6.8) for shame when wronged. This can be compared with the other emotional reactions where the RRs were between 1.1 (CI 0.9 to 1.3)-1.4 (CI 1.2 to 1.7). We found no association between country of birth and feeling shame after having experienced negative encounters.

    Conclusions: We found that the RR of feeling shame when wronged was significantly higher compared with other feelings. Along with theoretical considerations, and the specific types of negative encounters associated with shame, the results indicate that our research hypothesis might be plausible. We think that the results deserve to be used as point of departure for future research.

  • 196.
    Lynøe, Niels
    et al.
    Centrum för hälso-och sjukvårdsetik, Karolinska institutet, Stockholm, Sweden.
    Engström, Ingemar
    Örebro University, School of Medical Sciences.
    Juth, Niklas
    Centrum för hälso-och sjukvårdsetik, Karolinska institutet, Stockholm, Sweden.
    Dödshjälp bakom okunskapens slöja2018In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 115, no 24, p. 1020-1020, article id EZ4TArticle in journal (Refereed)
  • 197. Lynøe, Niels
    et al.
    Eriksson, Anders
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Forensic Medicine.
    Skakvåld mot spädbarn: läkarens rollmåste särskiljas från rättsväsendetsroll2019In: Tidsskrift for Den norske lægeforening, ISSN 0029-2001, E-ISSN 0807-7096, Vol. 139, no 3, p. 226-227Article in journal (Other academic)
  • 198. Lövtrup, Michael
    et al.
    Engström, Ingemar
    Wennlund, Elisabet
    Asplund, Kjell
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Dödshjälp: En kunskapssammanställning2017Report (Other academic)
    Abstract [sv]

    Smer ger i denna rapport en bred översyn av kunskapsläget kring dödshjälp, med fokus på forskning och statistik från länder och delstater som legaliserat dödshjälp i någon form. Utifrån de uppgifter som framkommer i kunskapsgenomgången analyseras stödet för några av de vanligast förekommande argumenten i den svenska debatten för och mot dödshjälp. Syftet med rapporten är att bidra till en mer faktabaserad debatt kring dödshjälp.

  • 199.
    MacGregor, Oskar
    University of Skövde, School of Bioscience. University of Skövde, The Systems Biology Research Centre.
    WADA's Whereabouts Requirements and Privacy2015In: Routledge Handbook of Drugs and Sport / [ed] Verner Møller, Ivan Waddington & John M. Hoberman, London: Routledge, 2015, p. 310-321Chapter in book (Refereed)
  • 200.
    MacGregor, Oskar
    et al.
    Swansea University, UK.
    McNamee, Mike
    Swansea University, UK.
    Harm, risk, and doping analogies: A counter-response to Kious2011In: Theoretical Medicine and Bioethics, ISSN 1386-7415, E-ISSN 1573-0980, Vol. 32, no 3, p. 201-7Article in journal (Refereed)
    Abstract [en]

    Brent Kious has objected to our previous criticism of his views on doping, maintaining that we, by and large, misrepresented his position. In this response, we strengthen our original misgivings, arguing that (1) his views on risk of harm in sport are either uncontroversially true (not inconsistent with the views of many doping opponents) or demonstrably false (attribute to doping opponents an overly simplistic view), (2) his use of analogies (still) indicates an oversimplification of many issues surrounding the question of doping in sports, and (3) his doping analogies are insufficiently precise to support his conclusions.

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