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  • 1.
    Matar, Amal
    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.
    Hansson, M 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.
    “A perfect society”— Swedish policymakers’ ethical and social views on preconception expanded carrier screening2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001Article 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.

  • 2.
    Samuel, Gabrielle
    et al.
    Kings Coll London, Dept Global Hlth & Social Med, London, England.
    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.
    Cornel, Martina
    Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.
    van El, Carla
    Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Dept Clin Genet, Sect Community Genet, Amsterdam, Netherlands.
    Hall, Alison
    PHG Fdn, 2 Worts Causeway, Cambridge CB1 8RN, England.
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, England.
    Prainsack, Barbara
    Kings Coll London, Dept Global Hlth & Social Med, London, England;Univ Vienna, Dept Polit Sci, Vienna, Austria.
    A response to the forensic genetics policy initiative's report "Establishing Best Practice for Forensic DNA Databases"2018In: Forensic Science International: Genetics, ISSN 1872-4973, E-ISSN 1878-0326, Vol. 36, p. E19-E21Article in journal (Other academic)
  • 3.
    Slokenberga, Santa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Book review - T.K. Hervey, C.A. Young and L.E. Bishop (eds.) Research Handbook on EU Health Law and Policy (Cheltenham: Edward Elgar Publishing, 2017), ISBN 978-1785364716, 592 pp.2018In: European Journal of Health Law, ISSN 0929-0273, E-ISSN 1571-8093, Vol. 25, no 3, p. 355-360Article, book review (Other academic)
  • 4.
    Whichello, Chiara
    et al.
    Erasmus Univ, Rotterdam, Netherlands.
    Soekhai, Vikas
    Erasmus Univ, Rotterdam, Netherlands.
    Levitan, Bennett
    Janssen R&D, Titusville, NJ USA.
    Veldwijk, Jorien
    Erasmus Univ, Rotterdam, Netherlands.
    Hammad, Tarek
    EMD Serono Res & Dev, Billerica, MA USA.
    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.
    van Overbeeke, Eline
    Katholieke Univ Leuven, Leuven, Belgium.
    Russo, Selena
    European Inst Oncol, Milan, Italy.
    Mohammed, Ateesha
    Bayer, Whippany, NJ USA.
    Hermann, Richard
    AstraZeneca, Wilmington, DE USA.
    Huys, Isabelle
    Katholieke Univ Leuven, Leuven, Belgium.
    Patadia, Vaishali
    Sanofi, Bridgewater, NJ USA.
    Juhaeri, Juhaeri
    Sanofi, Bridgewater, NJ USA.
    de Bekker-Grob, Esther
    Erasmus Univ, Rotterdam, Netherlands.
    Compendium of methods for measuring patient preferences in medical treatment2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 517-518, article id 1135Article in journal (Other academic)
  • 5.
    Pettersson, Mona
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    COMPETENCE AND COMMUNICATION: Do Not Resuscitate Decisions in Cancer Care2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Within cancer care, do not resuscitate (DNR) decisions are frequently made. DNR decisions can be ethically difficult and lead to conflicts of interest and disagreements within the medical team. This thesis brings together empirical knowledge of DNR decisions in cancer care and theoretical discussions on the ethical aspects and the competence needed to make such decisions.

    The overall aim of this project was to investigate the clinical and ethical aspects of DNR decisions from the perspectives of nurses and physicians working in hematology and oncology care. The methods used were qualitative, with individual interviews, and quantitative, using a web survey. Ethical theories, principles and models were used   in the planning of the studies and to explain and discuss the results.

    Fifteen nurses in Study I expressed a close relationship with their patients. They expressed how they needed clear and well-documented decisions on DNR to provide good care to patient and relatives. Sixteen physicians participated in Study II. They described how they made decisions on DNR mainly on medical grounds, but reflected on ethical aspects of the decision, weighing maleficence and beneficence.  In Study III, the interviews from Study I and II were analyzed from the perspective of ethical competence. The results showed that physicians and nurses were able to reflect on their ethical competence in relation to DNR decisions and described ethical competence as both being good and doing right. Also knowledge in ethics was emphasized.  In Study IV, 216 nurses and physicians participated. Most respondents thought it was important for patients and relatives to participate in, and be informed about, a DNR decision, but fewer thought that this was likely to happen. Nurses rated the importance higher than physicians did. The most important attributes in relation to DNR decisions for both nurses and physicians pertained more to medical viewpoints than to ethical values.

    DNR decisions in cancer care can be associated with ethical conflicts of interest, and nurses and physicians have different perspective of DNR decisions which they need to share. Competence in ethics and inter-professional communication are crucial for nurses and physicians participating in such decisions.

    List of papers
    1. Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    Open this publication in new window or tab >>Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care
    2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 21, no 8, p. 902-915Article in journal (Refereed) Published
    Abstract [en]

    Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce.

    Objective: The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions.

    Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used.

    Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually.

    Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration.

    Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties.

    Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-239297 (URN)10.1177/0969733014533238 (DOI)
    Available from: 2014-12-22 Created: 2014-12-22 Last updated: 2018-10-03
    2. “Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    Open this publication in new window or tab >>“Not the most difficult decision”. Physicians’ experience of Do-Not-Resuscitate (DNR) orders in hematology and oncology care.
    (English)Manuscript (preprint) (Other academic)
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361756 (URN)
    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2018-10-03
    3. Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    Open this publication in new window or tab >>Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care
    2018 (English)In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed) Published
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

    Keywords
    Ethical competence; DNR decisions; Oncology; Hematology; Nurses; Physicians
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-355087 (URN)10.1186/s12910-018-0300-7 (DOI)000435613900002 ()29914440 (PubMedID)
    Funder
    Swedish Cancer Society
    Available from: 2018-06-26 Created: 2018-06-26 Last updated: 2018-10-03Bibliographically approved
    4. Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    Open this publication in new window or tab >>Perspectives on the DNR decisions process: a survey of nurses and physicians in hematology and oncology
    2018 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 11Article in journal (Refereed) Published
    Abstract [en]

    Introduction

    In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent.

    Objective

    The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions.

    Methods

    A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology.

    Results

    Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions.

    Conclusion

    Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-361787 (URN)10.1371/journal.pone.0206550 (DOI)
    Note

    Contributed equally to this work: Mona Pettersson, Anna T. Höglund, Mariann Hedström

    Available from: 2018-09-27 Created: 2018-09-27 Last updated: 2018-11-29Bibliographically approved
  • 6.
    Farisco, Michele
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Science and Society Unit, Biogem, Biology and Molecular Genetics Institute, Ariano Irpino, Italy.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Changeux, Jean-Pierre
    Drug addiction: from neuroscience to ethics2018In: Frontiers in Psychiatry, ISSN 1664-0640, E-ISSN 1664-0640, Vol. 9, article id 595Article in journal (Refereed)
    Abstract [en]

    In the present paper we suggest a potential new ethical analysis of addiction focusing on the relationship between aware and unaware processings in the brain, i.e. on what is consciously and what is non-consciously perceived by the individual. We take the case of the opioids epidemics to argue that a consideration of both aware and unaware processings provides a more comprehensive ethical framework to discuss the ethical issues raised by addiction.Finally, our hypothesis is that in addition to identified Central Nervous System’s neuronal/neurochemical factors contributing to addictive dynamics, the socio-economic status, i.e. the individual background, plays a causal role through epigenetic processes, originating the need for additional reward in the brain. This provides a strong base for a socio-political form of responsibility for preventing and managing addiction crisis.

  • 7. 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.

  • 8.
    Pettersson, Mona
    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. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    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.
    Ethical competence in DNR decisions: a qualitative study of Swedish physicians and nurses working in hematology and oncology care2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 19, article id 63Article in journal (Refereed)
    Abstract [en]

    Background

    DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.

    Methods

    Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.

    Results

    Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.

    Conclusions

    In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

  • 9.
    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. Uppsala University.
    Filosofía de las Neurociencias.: Cerebro, mente, persona2018Book (Other academic)
    Abstract [es]

    Michele Farisco presenta los desafíos que las neurociencias plantean al saber filosófico, sobre todo en el dominio ético-antropológico. El neurocientífico no permanece circunscripto a un ámbito disciplinar sino que intenta acercarse e indagar, con métodos y finalidades relativamente diversas, el sistema nervioso del hombre, llegando, en algunas casos, a elaborar una visión absolutamente biologicista de la naturaleza humana. Esta visión se ha visto potenciada por la posibilidad de visualizar el funcionamiento del cerebro gracias a las técnicas del neuroimaging. Farisco, luego de señalar las limitaciones instrumentales y conceptuales de las técnicas del neuroimaging, advierte al lector acerca de dos posibles errores: la denominada “falacia mereológica”, que consiste en atribuir al cerebro todas las actividades mentales, considerando la parte como un todo, y el error de confundir antecedentes y consecuentes, fundamentando por qué el hombre no es un sí neuroquímico (brainhood) cuyo ser se identifica con el cerebro. Farisco, con total justeza, señala que en esta posición antropológica reductiva, la ideología prevalece sobre la ciencia por cuanto formula afirmaciones que escapan totalmente al dominio de las neurociencias en particular, y de la ciencia en general.

  • 10.
    Höglund, Anna
    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.
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Holmström, Inger
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Lännerström, Linda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Family Medicine and Preventive Medicine.
    Kaminsky, Elenor
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    From denial to awareness: a conceptual model for obtaining equity in healthcare2018In: International Journal for Equity in Health, ISSN 1475-9276, E-ISSN 1475-9276, Vol. 17, no 9Article in journal (Refereed)
  • 11.
    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.

  • 12.
    Hansson, Mats G.
    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. ..
    Bouder, Frederic
    Dept Technol & Soc Studies, Maastricht.
    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.
    Genetics and risk - an exploration of conceptual approaches to genetic risk2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal (Other academic)
  • 13.
    de Bekker-Grob, Esther W.
    et al.
    Erasmus School of Health Policy & Management and Erasmus Choice Modelling Centre, Erasmus University Rotterdam, the Netherlands.
    Juhaeri, Juhaeri
    Sanofi Aventis Recherche & Développement, SARD, Chilly Mazarin, France.
    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.
    Levitan, Bennett
    Janssen R&D LLC, Titusville, NJ, USA.
    Giving patients' preferences a voice in the medical product lifecycle: why, when and how?: The public-private PREFER project: Work package 22018In: ISPOR Value & Outcomes Spotlight, ISSN 2375-866X, Vol. 4, no 3, p. 19-21Article in journal (Other academic)
  • 14.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    God vård innebär att sällsynta sjukdomar ges resurser2018In: Dagens MedicinArticle in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Sverige behöver ta ett nationellt ansvar så att människor med sällsynta diagnoser också kan få ta del av forskning och nya läkemedel.

  • 15.
    Vears, D. F.
    et al.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    Niemiec, Emilia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Univ Bologna, Erasmus Mundus Joint Int Doctoral PhD Degree Prog, Bologna, Italy;Univ Turin, Dept Law, Turin, Italy;Leibniz Univ Hannover, Cte Eth & Law Life Sci, Hannover, Germany.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Borry, P.
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, Kapucijnenvoer 35,Box 7001, B-3000 Leuven, Belgium;Leuven Inst Human Genom & Soc, Leuven, Belgium.
    How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings?: A content analysis2018In: Clinical Genetics, ISSN 0009-9163, E-ISSN 1399-0004, Vol. 94, no 3-4, p. 321-329Article in journal (Refereed)
    Abstract [en]

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

  • 16.
    Eriksson, Stefan
    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.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal Bräcke Högskola.
    Andersson, Lars
    Ersta Sköndal Bräcke Högskola.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    How to counter undeserving authorship2018In: Insights: the UKSG journal, E-ISSN 2048-7754, Vol. 31, no 1, p. 1-6Article in journal (Refereed)
    Abstract [en]

    The average number of authors listed on contributions to scientific journals has increased considerably over time. While this may be accounted for by the increased complexity of much research and a corresponding need for extended collaboration, several studies suggest that the prevalence of non-deserving authors on research papers is alarming. In this paper a combined qualitative and quantitative approach is suggested to reduce the number of undeserving authors on academic papers: 1) ask scholars who apply for positions to explain the basics of a random selection of their co-authored papers, and 2) in bibliometric measurements, divide publications and citations by the number of authors.

  • 17.
    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.

  • 18.
    de Wert, Guido
    et al.
    Department of Health, Ethics and Society, Research Institutes GROW and CAPHRI, Fac. of Health, Medicine and the Life Sciences, Maastricht University, Maastricht, The Netherlands.
    Pennings, Guido
    Bioethics Institute Ghent, Department of Philosophy and Moral Science, Ghent University, Ghent, Belgium.
    Clarke, Angus
    School of Medicine, Cardiff University, Cardiff, UK.
    Eichenlaub-Ritter, Ursula
    Institute of Gene Technology/Microbiology, Faculty of Biology, University of Bielefeld, Bielefeld, Germany.
    van El, Carla G.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Forzano, Francesca
    Clinical Genetics Department, Guy’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London, UK.
    Goddijn, Mariëtte
    Center for Reproductive Medicine, Department of Obstetrics and Gynecology, Academic Medical Center, Amsterdam-Zuidoost, The Netherlands.
    Heindryckx, Björn
    Ghent-Fertility and Stem cell Team (G-FaST), Department for Reproductive Medicine, Ghent University Hospital, Ghent, Belgium.
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, Dragica
    Laboratory for Molecular Biology, Institute of Molecular Genetics and Genetic Engineering, University of Belgrade, Belgrade, Serbia.
    Rial-Sebbag, Emmanuelle
    University Paul Sabatier Toulouse, Toulouse, France.
    Tarlatzis, Basil C.
    1st Department of Obstetrics & Gynecology, School of Medicine, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Cornel, Martina C.
    Department of Clinical Genetics, Section Community Genetics, and Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands.
    Human germline gene editing: Recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 445-449Article in journal (Refereed)
    Abstract [en]

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

  • 19.
    Viberg Johansson, Jennifer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question.

    The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participants’ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participants’ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information.

    As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of people’s attitudes and preferences need to explicitly engage the complexity of genetic incidental findings.

    List of papers
    1. Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    Open this publication in new window or tab >>Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
    2015 (English)In: Ethics, Law and Governance of Biobanking: National, European and International Approaches / [ed] Mascalzoni, Deborah, Springer, 2015Chapter in book (Refereed)
    Place, publisher, year, edition, pages
    Springer, 2015
    Series
    International Library of Ethics Law and Technology, ISSN 1875-0044 ; 14
    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-244975 (URN)9789401795739 (ISBN)
    Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2018-08-01Bibliographically approved
    2. Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    Open this publication in new window or tab >>Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
    2016 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 30, no 3, p. 203-209Article in journal (Refereed) Published
    Abstract [en]

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

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

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

    National Category
    Medical Ethics
    Identifiers
    urn:nbn:se:uu:diva-244971 (URN)10.1111/bioe.12160 (DOI)000371487500010 ()
    Funder
    Riksbankens Jubileumsfond, PR2013-0123EU, FP7, Seventh Framework Programme, 305444Swedish Research CouncilSwedish Heart Lung Foundation
    Available from: 2015-02-23 Created: 2015-02-23 Last updated: 2018-08-01Bibliographically approved
    3. Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Open this publication in new window or tab >>Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research
    Show others...
    2018 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 3, p. 422-427Article in journal (Refereed) Published
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

    Keywords
    Lay understanding; Conception of genetic risk; Making sense of genetic risk in research; Genetic risk communication
    National Category
    Medical Genetics
    Identifiers
    urn:nbn:se:uu:diva-330221 (URN)10.1016/j.pec.2017.09.009 (DOI)000427826300007 ()
    Available from: 2017-09-27 Created: 2017-09-27 Last updated: 2018-08-01Bibliographically approved
    4. Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Open this publication in new window or tab >>Research participants’ preferences for receiving incidental genetic risk information: a discrete choice experiment
    Show others...
    (English)In: Genetics in Medicine, ISSN 1098-3600, E-ISSN 1530-0366Article in journal (Refereed) Submitted
    National Category
    Public Health, Global Health, Social Medicine and Epidemiology Other Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-356552 (URN)
    Available from: 2018-08-01 Created: 2018-08-01 Last updated: 2018-08-01
  • 20.
    Farisco, Michele
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Science and Society Unit, Biogem Genetic Research Centre, Ariano Irpino (AV), Italy.
    Hellgren Kotaleski, Jeanette
    Science for Life Laboratory, School of Computer Science and Communication, KTH Royal Institute of Technology, Stockholm, Sweden; Department of Neuroscience, Karolinska Institute, Solna, Sweden.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Large-scale brain simulation and disorders of consciousness: Mapping technical and conceptual issues2018In: Frontiers in Psychology, ISSN 1664-1078, E-ISSN 1664-1078, Vol. 9, article id 585Article in journal (Refereed)
    Abstract [en]

    Modelling and simulations have gained a leading position in contemporary attempts to describe, explain, and quantitatively predict the human brain's operations. Computer models are highly sophisticated tools developed to achieve an integrated knowledge of the brain with the aim of overcoming the actual fragmentation resulting from different neuroscientific approaches. In this paper we investigate plausibility of simulation technologies for emulation of consciousness and the potential clinical impact of large-scale brain simulation on the assessment and care of disorders of consciousness (DOCs), e.g. Coma, Vegetative State/Unresponsive Wakefulness Syndrome, Minimally Conscious State.Notwithstanding their technical limitations, we suggest that simulation technologies may offer new solutions to old practical problems, particularly in clinical contexts. We take DOCs as an illustrative case, arguing that the simulation of neural correlates of consciousness is potentially useful for improving treatments of patients with DOCs.

  • 21.
    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.

  • 22. Piciocchi, Cinzia
    et al.
    Ducato, Rossana
    Martinelli, Lucia
    Perra, Silvia
    Tomasi, Marta
    Zuddas, Carla
    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.
    Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 177-190Article in journal (Refereed)
    Abstract [en]

    This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance of genetic resources in the context of genetic biobanks in Italy is discussed, as an example of the stratification of different inputs and rules: EU law, national law, orders made by authorities and soft law, which need to be integrated with ethical principles, technological strategies and solutions. After providing an overview of the Italian legal regulation of genetic data processing, it considers the fate of genetic material and IP rights in the event of a biobank's insolvency. To this end, it analyses two case studies: a controversial bankruptcy case which occurred in Sardinia, one of the first examples of private and public partnership biobanks. Another case study considered is the Chris project: an example of partnership between a research institute in Bolzano and the South Tyrolean Health System. Both cases seem to point in the same direction, suggesting expediency of promoting and improving public-private partnerships to manage biological tissues and biotrust to conciliate patent law and public interest.

  • 23. 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.

  • 24.
    Viberg, Jennifer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Segerdahl, Pär
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hösterey Ugander, Ulrika
    Clinical Genetics, Sahlgrenska University Hospital.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Langenskiöld, Sophie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Economics. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet..
    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research2018In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 3, p. 422-427Article in journal (Refereed)
    Abstract [en]

    Objective

    It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information?

    Method

    A phenomenographic approach was chosen to explore research participants’ understanding and assessment of genetic risk. We conducted four focus-group (N = 16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease.

    Results

    Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead.

    Conclusion

    Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making.

    Practical implications

    Risk communication may be enhanced by tailoring the communication to the participants’ own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.

  • 25.
    Whichello, Chiara
    et al.
    Erasmus Univ, Rotterdam, Netherlands.
    Schölin Bywall, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Mauer, Jonathan
    Pfizer Inc, New York, NY USA.
    Watt, Stephen J.
    Pfizer Inc, New York, NY USA.
    Cleemput, Irina
    KCE Belgian Healthcare Knowledge Ctr, Brussels, Belgium.
    Anne, Cathy
    Merck & Co Inc, Kenilworth, NJ USA.
    van Overbeeke, Eline
    Katholieke Univ Leuven, Leuven, Belgium.
    Huys, Isabelle
    Katholieke Univ Leuven, Leuven, Belgium.
    Janssens, Rosanne
    Katholieke Univ Leuven, Leuven, Belgium.
    Hermann, Richard
    AstraZeneca, Gaithersburg, MD USA.
    Veldwijk, Jorien
    Erasmus Univ, Rotterdam, Netherlands.
    Mapping benefit-risk decision-making processes and identifying decision points with the potential to include patient preference information throughout the medical product lifecycle2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 206-206, article id 443Article in journal (Other academic)
  • 26.
    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.
    Iwarsson, Erik
    Karolinska Inst, Karolinska Univ Hosp, Dept Mol Med & Surg, CMM L8 02, Stockholm, Sweden.;Karolinska Inst, Karolinska Univ Hosp, Ctr Mol Med, CMM L8 02, Stockholm, Sweden..
    Mapping uncertainty in genomics2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 117-128Article in journal (Refereed)
    Abstract [en]

    The relatively novel and dynamic science of genomics holds many unknowns for stakeholders, and in particular for researchers and clinicians, as well as for participants and patients. At a time when many authors predict a future in which genomic medicine will be the norm, it is particularly relevant to discuss the unknowns surrounding genetics and genomics, including the notions of risk and uncertainty. This article will present a discussion regarding the uncertainty pertaining specifically to high throughput sequencing approaches, including the topic of incidental findings. This discussion will be guided by a taxonomy of uncertainty conceptualised around three areas of uncertainty: the source of uncertainty, the issues of uncertainty and the loci of uncertainty. This taxonomy can be used as a tool by all stakeholders involved in genomics to help further understand and anticipate uncertainties in genomics. Furthermore, to better contextualize this information, and also because this contribution is born out of an international project titled Mind the Risk', which addresses risk information in genetics and genomics from many different disciplinary perspectives, another aim of this article is to briefly present the basic issues pertaining to the unknowns, risks, and uncertainties of genetics as well as genomics for an audience of non-geneticists. Ultimately, the mapping out of uncertainty in genomics should allow for a better characterization of the uncertainty and consequently for a better management and communication of these uncertainties to end-users (research participants and patients).

  • 27.
    Howard, H.C.
    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.
    Iwarsson, E
    Mapping Uncertainty in Genomics2018In: Journal or Risk Research, Vol. 21, no 2, p. 117-128Article in journal (Refereed)
  • 28.
    Farisco, Michele
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Neuroethics: A Conceptual Approach2018In: Cambridge Quarterly of Healthcare Ethics, ISSN 0963-1801, E-ISSN 1469-2147, Vol. 27, no 4, p. 717-727Article in journal (Refereed)
    Abstract [en]

    In this article, we begin by identifying three main neuroethical approaches: neurobioethics, empirical neuroethics, and conceptual neuroethics. Our focus is on conceptual approaches that generally emphasize the need to develop and use a methodological modus operandi for effectively linking scientific (i.e., neuroscience) and philosophical (i.e., ethics) interpretations. We explain and assess the value of conceptual neuroethics approaches and explain and defend one such approach that we propose as being particularly fruitful for addressing the various issues raised by neuroscience: fundamental neuroethics.

  • 29.
    Salles, Arleen
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Evers, Kathinka
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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.
    Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project2018In: Neuroethics, ISSN 1874-5490, E-ISSN 1874-5504Article in journal (Refereed)
    Abstract [en]

    Responsible Research and Innovation (RRI) is an important ethical, legal, and political theme for the European Commission. Although variously defined, it is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The framework of RRI calls for contextually addressing not just research and innovation impact but also the background research process, specially the societal visions underlying it and the norms and priorities that shape scientific agendas. This requires the integration of anticipatory, inclusive, and responsive dimensions, and the nurturing of a certain type of reflexivity among a variety of stakeholders, from scientists to funders. In this paper, we do not address potential limitations but focus on the potential contribution of philosophical reflection to RRI in the context of the Ethics and Society subproject of the Human Brain Project (HBP). We show how the type of conceptual analysis provided by philosophically oriented approaches theoretically and ethically broadens research and innovation within the HBP. We further suggest that overt inclusion of philosophical reflection can promote the aims and objectives of RRI.

  • 30.
    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.
    Neuroethics in Context: The Development of the Discipline in Argentina2018In: The Routledge Handbook of Neuroethics / [ed] Johnson S. Rommelfanger K, Routledge, 2018Chapter in book (Refereed)
    Abstract [en]

    At present, the impact of scientific research and the effects of neurotechnology on human beings not only as biological beings but also as moral beings is increasingly felt in medicine and the humanities. It is reasonable to think that the future will bring even more ways of knowing, modifying, healing, and possibly enhancing the brain thus challenging our intuitions about who we are and how we act - or should act. Neuroethics attempts to both offer a collective response to the ethical issues that rapidly developing science raises, and to find new answers to age-old philosophical questions. This discipline is not as established in Argentina as it is in the United States and some European nations, but the unique historic-cultural and academic landscape of Argentina suggests promises for neuroethics to deliver original results if/when this development occurs. Here, I  briefly explain some of the neuroethical concerns that attract more attention locally and I make explicit some of the salient topics and challenges shaping neuroethics in Argentina. 

  • 31. Delegates, Global Neuroethics Summit
    et al.
    Rommelfanger, Karen S.
    Emory Univ, Ctr Eth, Neuroeth Program, Dept Neurol, 1531 Dickey Dr, Atlanta, GA 30322 USA;Emory Univ, Ctr Eth, Neuroeth Program, Dept Psychiat & Behav Sci, 1531 Dickey Dr, Atlanta, GA 30322 USA.
    Jeong, Sung-Jin
    Korea Brain Res Inst, 61 Choeomdan Ro, Daegu 41068, South Korea.
    Ema, Arisa
    Univ Tokyo, Coll Arts & Sci, Sci & Technol Studies, Tokyo 1138654, Japan.
    Fukushi, Tamami
    Japan Agcy Med Res & Dev, Dept Res Infrastruct, Tokyo, Japan.
    Kasai, Kiyoto
    UTIAS, Dept Neuropsychiat, WPI IRCN, Bunkyo Ku, 7-3-1 Hongo, Tokyo 1138655, Japan;UTIAS, Int Res Ctr Neurointelligence, WPI IRCN, Bunkyo Ku, 7-3-1 Hongo, Tokyo 1138655, Japan.
    Ramos, Khara M.
    NINDS, Off Sci Liaison, Off Director, NIH, Bldg 36,Rm 4D04, Bethesda, MD 20892 USA.
    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.
    Singh, Ilina
    Univ Oxford, Dept Psychiat, Oxford, England;Univ Oxford, Wellcome Ctr Eth & Humanities, Oxford, England.
    Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives2018In: Neuron, ISSN 0896-6273, E-ISSN 1097-4199, Vol. 100, no 1, p. 19-36Article, review/survey (Refereed)
    Abstract [en]

    Increasingly, national governments across the globe are prioritizing investments in neuroscience. Currently, seven active or in-development national-level brain research initiatives exist, spanning four continents. Engaging with the underlying values and ethical concerns that drive brain research across cultural and continental divides is critical to future research. Culture influences what kinds of science are supported and where science can be conducted through ethical frameworks and evaluations of risk. Neuroscientists and philosophers alike have found themselves together encountering perennial questions; these questions are engaged by the field of neuroethics, related to the nature of understanding the self and identity, the existence and meaning of free will, defining the role of reason in human behavior, and more. With this Perspective article, we aim to prioritize and advance to the foreground a list of neuroethics questions for neuroscientists operating in the context of these international brain initiatives.

  • 32.
    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.
    Offentlighet eller dataskydd som ledande princip i EU:s integrerade förvaltning?2018In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, p. 91-113Article in journal (Refereed)
    Abstract [sv]

    Informationshantering har kommit att bli en central del i samarbetet mellan EU:s institutioner, myndigheter och organ och nationella myndigheter, vanligen benämnt den europeiska integrerade förvaltningen. En stor del av de kontakter som tas mellan de samarbetande myndigheterna rör insamling, delning och spridning av information, både i myndigheternas faktiska förvaltning och som underlag i enskilda ärenden. Reglering av informationshantering har utvecklats till ett viktigt policyområde för EU-lagstiftaren, med bl.a. en strategi för en inre digital marknad och en ny allmän dataskyddsförordning som träder i kraft i maj 2018. Därutöver har EU-domstolen utvecklat en progressiv praxis till skydd för den grundläggande rätten till skydd för personuppgifter. En viktig fråga ur svenskt perspektiv är hur utvecklingen påverkar den svenska offentlighetsprincipen, såsom den kommer till uttryck i tryckfrihetsförordningen. I artikeln analyseras rättsfall från EU-domstolen och Högsta förvaltningsdomstolen som väger intresset av offentlighet mot intresset av dataskydd, liksom förslaget om reglering av informationshantering i ReNEUALs  modellag för den europeiska förvaltningen. Kan Sverige fortsätta att ha offentlighetsprincipen som den ledande principen för sin förvaltning, när förvaltningen i en allt större utsträckning samverkar och delar information med europeiska och nationella organ inom EU:s integrerade förvaltning?

  • 33.
    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.

  • 34.
    Schölin Bywall, Karin
    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.
    Veldwijk, Jorien
    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.
    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.
    Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis2018In: the patient - patient-centered outcomes research, ISSN 1178-1653, article id https://doi.org/10.1007/s40271-018-0344-2Article in journal (Refereed)
    Abstract [en]

    Background

    There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI).

    Objectives

    The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products.

    Methods

    Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products. The interviews were used to draft and validate the interview guide for focus groups with patients with RA. Participants were purposively sampled in collaboration with the Swedish Rheumatism Association in Stockholm and Uppsala. Each focus group consisted of three to six patients (18 in total). All interviews were audio-recorded, transcribed verbatim, and analysed using content analysis.

    Results

    According to the participants, PPI could lead to regulators considering patients’ needs, lifestyles and well-being when making decisions. PPI was important in all stages of the medical product lifecycle. Participants reported that, when participating in a preference study, it is important to be well-informed about the use of the study and the development, components, administration, and risks related to the medical products.

    Conclusions

    Patients thought PPI could be valuable to consider in regulatory decisions. It is essential for patients to be well-informed when asked for their preferences. Research on information materials to inform patients in preference studies is needed to increase the value of PPI in regulatory decision making.

  • 35.
    Kihlbom, Ulrik
    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.
    Russo, Selena
    European Inst Oncol, Milan, Italy.
    Monzani, Dario
    European Inst Oncol, Milan, Italy.
    Stichele, Geert Vander
    MindBytes, Ghent, Belgium.
    Verscheuren, Sarah
    MindBytes, Ghent, Belgium.
    Pinto, Cathy Anne
    Merck & Co Inc, Rahway, NJ 07065 USA.
    Patient-centered benefit-risk decision-making and the role of educational tools and psychological instruments in preference elicitation-Year 1 of IMI prefer2018In: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, no Suppl. 2, p. 512-512, article id 1123Article in journal (Other academic)
  • 36.
    Bayliss, Kerin
    et al.
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Raza, Karim
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England..
    Falahee, Marie
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    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.
    Starling, Bella
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Stack, Rebecca
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Nottingham Trent Univ, Sch Social Sci, Div Psychol, Nottingham, England..
    Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 167-189Article in journal (Refereed)
    Abstract [en]

    Background: The availability of tests to predict the risk of developing chronic diseases is increasing. The identification of individuals at high risk of disease can trigger early intervention to reduce the risk of disease and its severity. In order for predictive tests to be accepted and used by those at risk, there is a need to understand people's perceptions of predictive testing.

    Method: A meta-synthesis of qualitative research that explored patient and public perceptions of predictive testing for chronic inflammatory diseases was conducted. Studies were coded by researchers and patient research partners, and then organised into common themes associated with the acceptability or use of predictive testing.

    Results: Perceived barriers to predictive testing were identified, including a concern about a lack of confidentiality around the use of risk information; a lack of motivation for change; poor communication of information; and a possible impact on emotional well-being. In order to reduce these barriers, the literature shows that a patient-centred approach is required at each stage of the testing process. This includes the consideration of individual needs, such as accessibility and building motivation for change; readily available and easy to understand pre and post-test information; support for patients on how to deal with the implications of their results; and the development of condition specific lifestyle intervention programmes to facilitate sustainable lifestyle changes.

    Conclusion: Patients and members of the public had some concerns about predictive testing; however, a number of strategies to reduce barriers and increase acceptability are available. Further research is required to inform the development of a resource that supports the individual to make an informed decision about whether to engage in a predictive test, what test results mean, and how to access post-test support.

  • 37.
    Ancillotti, Mirko
    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. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Institute of Health Policy and Management, Erasmus University, Bayle (J) building - Campus Woudestein, Burgemeester Oudlaan 50, 3062 PA Rotterdam, The Netherlands.
    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.
    Andersson, Dan I
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Biochemistry and Microbiology.
    Godskesen, Tove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Ersta Sköndal Bräcke högskola, Stigbergsgatan 30, 100 61 Stockholm, Sweden.
    Public awareness and individual responsibility needed for judicious use of antibiotics: a qualitative study of public beliefs and perceptions2018In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 18, no 1, article id 1153Article in journal (Refereed)
    Abstract [en]

    Background

    High consumption of antibiotics has been identified as an important driver for the increasing antibiotic resistance, considered to be one of the greatest threats to public health globally. Simply informing the public about this consequence is insufficient to induce behavioral change. This study explored beliefs and perceptions among Swedes, with the aim of identifying factors promoting and hindering a judicious approach to antibiotics use. The study focused primarily on the medical use of antibiotics, also considering other aspects connected with antibiotic resistance, such as travelling and food consumption.

    Methods

    Data were collected through focus group discussions at the end of 2016. Twenty-three Swedes were recruited using an area-based approach and purposive sampling, aiming for as heterogeneous groups as possible regarding gender (13 women, 10 men), age (range 20–81, mean 38), and education level. Interview transcripts were analyzed using qualitative content analysis. The Health Belief Model was used as a theoretical framework.

    Results

    Antibiotic resistance was identified by participants as a health threat with the potential for terrible consequences. The severity of the problem was perceived more strongly than the actual likelihood of being affected by it. Metaphors such as climate change were abundantly employed to describe antibiotic resistance as a slowly emerging problem. There was a tension between individual (egoistic) and collective (altruistic) reasons for engaging in judicious behavior. The individual effort needed and antibiotics overprescribing were considered major barriers to such behavior. In their discussions, participants stressed the need for empowerment, achieved through good health communication from authorities and family physicians.

    Conclusions

    Knowledge about antibiotic consumption and resistance, as well as values such as altruism and trust in the health care system, has significant influence on both perceptions of individual responsibility and on behavior. This suggests that these factors should be emphasized in health education and health promotion. To instead frame antibiotic resistance as a slowly emerging disaster, risks diminish the public perception of being susceptible to it.

  • 38. Falkenström, Erica
    et al.
    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.
    På spaning efter etik: Etisk kompetens och ansvarstagande för ledning ochstyrning av hälso- och sjukvården2018 (ed. 1)Book (Other academic)
  • 39.
    Godskesen, Tove
    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.
    Fernow, Josepine
    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.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, p. 1-10Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.

  • 40. Niemiec, E.
    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.

  • 41.
    Kodra, Yllka
    et al.
    Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy.
    Weinbach, Jerome
    Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France.
    Posada-de-la-Paz, Manuel
    RDR, ISCIII, Inst Rare Dis Res, Madrid 28029, Spain;CIBERER, Madrid 28029, Spain.
    Coi, Alessio
    CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy.
    Lemonnier, S. Lydie
    RD Connect & Vaincre Mucoviscidose French Cyst Fi, Patient Advisory Council, F-75013 Paris, France.
    van Enckevort, David
    Univ Groningen, UMCG, Dept Genet, NL-9700 RB Groningen, Netherlands.
    Roos, Marco
    Leiden Univ, Med Ctr, NL-2333 ZA Leiden, Netherlands.
    Jacobsen, Annika
    Leiden Univ, Med Ctr, NL-2333 ZA Leiden, Netherlands.
    Cornet, Ronald
    Univ Amsterdam, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Med Informat, NL-1105 AZ Amsterdam, Netherlands.
    Ahmed, S. Faisal
    Univ Glasgow, Royal Hosp Children, Off Rare Condit, Glasgow G51 4TF, Lanark, Scotland.
    Bros-Facer, Virginie
    Patient Advisory Council RD Connect & EURORDIS Ra, F-75014 Paris, France.
    Popa, Veronica
    RD Connect & MCT8 AHDS Fdn, Patient Advisory Council, Oklahoma City, OK 74464 USA.
    Van Meel, Marieke
    RD Connect & NephcEurope Fdn, Patient Advisory Council, NL-2411 DW Bodegraven, Netherlands.
    Renault, Daniel
    Patient Advisory Council RD Connect, B-1200 Brussels, Belgium;FEDERG, B-1200 Brussels, Belgium.
    von Gizycki, Rainald
    Patient Advisory Council RD Connect, D-53113 Bonn, Germany;PRO RETINA Deutschland, D-53113 Bonn, Germany.
    Santoro, Michele
    CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy.
    Landais, Paul
    Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France;Montpellier Univ, Clin Res Inst, EA2415, F-34093 Montpellier, France.
    Torreri, Paola
    Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy.
    Carta, Claudio
    Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy.
    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.
    Gainotti, Sabina
    Ist Super Sanita, Off President, Bioeth Unit, I-00162 Rome, Italy.
    Lopez, Estrella
    RDR, ISCIII, Inst Rare Dis Res, Madrid 28029, Spain;CIBERER, Madrid 28029, Spain.
    Ambrosini, Anna
    Fdn Telethon, I-20129 Milan, Italy.
    Muller, Heimo
    Med Univ Graz, Diagnost & Res Ctr Mol BioMed, A-8010 Graz, Austria.
    Reis, Robert
    Med Univ Graz, Diagnost & Res Ctr Mol BioMed, A-8010 Graz, Austria.
    Bianchi, Fabrizio
    CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy.
    Rubinstein, Yaffa R.
    NIH, Natl Lib Med, Bethesda, MD 20892 USA.
    Lochmueller, Hanns
    Univ Freiburg, Fac Med, Dept Neuropediat, D-79160 Freiburg, Germany;Univ Freiburg, Fac Med, Muscle Disorders Med Ctr, D-79160 Freiburg, Germany;BIST, CRG, CNAG, Barcelona 08028, Spain.
    Mueller, Heimo
    Taruscio, Domenica
    Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy.
    Recommendations for Improving the Quality of Rare Disease Registries2018In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 15, no 8, article id 1644Article, review/survey (Refereed)
    Abstract [en]

    Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.

  • 42.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    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.
    Responsibility for scientific misconduct in collaborative papers2018In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, p. 423-430Article in journal (Refereed)
    Abstract [en]

    This paper concerns the responsibility of co-authors in cases of scientific misconduct. Arguments in research integrity guidelines and in the bioethics literature concerning authorship responsibilities are discussed. It is argued that it is unreasonable to claim that for every case where a research paper is found to be fraudulent, each author is morally responsible for all aspects of that paper, or that one particular author has such a responsibility. It is further argued that it is more constructive to specify what task responsibilities come with different roles in a project and describe what kinds of situations or events call for some kind of action, and what the appropriate actions might be.

  • 43. De Wert, G.
    et al.
    Heindryckx, B.
    Pennings, G.
    Clarke, A.
    Eichenlaub-Ritter, U.
    van El, Carla G.
    Forzano, F.
    Goddijn, M.
    Howard, Heidi C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Radojkovic, D.
    Rial-Sebbag, E.
    Dondorp, W.
    Tarlatzis, B. C.
    Cornel, M. C.
    Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE2018In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 26, no 4, p. 450-470Article in journal (Refereed)
    Abstract [en]

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

  • 44.
    Helgesson, Gert
    et al.
    Stockholm Centre for Healthcare Ethics, Karolinska Institutet.
    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.
    Revise the ICMJE Recommendations regarding authorship responsibility!2018In: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857, Vol. 31, no 3, p. 267-269Article in journal (Other academic)
    Abstract [en]

    Key points:

    • A clear set of rules regarding authorship responsibilities in academic publications is much needed.

    • The leading research integrity guidelines on scientific authorship, the International Committee of Medical Journal Editors Recommendations, are unclear about authorship responsibilities in case of misconduct.

    • The source of the problem is the fourth authorship criterion – it should be revised.

  • 45. Borry, Pascal
    et al.
    Bentzen, Heidi Beate
    Budin-Ljøsne, Isabelle
    Cornel, Martina C
    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.
    Feeney, Oliver
    Jackson, Leigh
    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.
    Mendes, Álvaro
    Peterlin, Borut
    Riso, Brigida
    Shabani, Mahsa
    Skirton, Heather
    Sterckx, Sigrid
    Vears, Danya
    Wjst, Matthias
    Felzmann, Heike
    The challenges of the expanded availability of genomic information: an agenda-setting paper.2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 103-116Article in journal (Refereed)
    Abstract [en]

    Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals' direct access to their genomic data. The expanded availability of genomic data is perceived as influencing the relationship between the various parties involved including healthcare professionals, researchers, patients, individuals, families, industry, and government. This results in a need to revisit their roles and responsibilities. In a 1-day agenda-setting meeting organized by the COST Action IS1303 "Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives," participants discussed the main challenges associated with the expanded availability of genomic information, with a specific focus on public-private partnerships, and provided an outline from which to discuss in detail the identified challenges. This paper summarizes the points raised at this meeting in five main parts and highlights the key cross-cutting themes. In light of the increasing availability of genomic information, it is expected that this paper will provide timely direction for future research and policy making in this area.

  • 46.
    de Bekker-Grob, Esther W.
    et al.
    Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.;Erasmus MC Univ Med Ctr, Sect Med Decis Making, Rotterdam, Netherlands.;Erasmus MC Univ Med Ctr, Dept Publ Hlth, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.
    Jonker, Marcel
    Erasmus Univ, Sect Hlth Technol Assessment, POB 1738, NL-3000 DR Rotterdam, Netherlands.;Erasmus Univ, Inst Hlth Policy & Management, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Donkers, Bas
    Erasmus Univ, Dept Business Econ, Rotterdam, Netherlands.;Erasmus Univ, Erasmus Sch Econ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands..
    Huisman, Jan
    Het Doktershuis, Ridderkerk, Netherlands..
    Buis, Sylvia
    Gezondheidsctr Ommoord, Rotterdam, Netherlands..
    Swait, Joffre
    Univ South Australia, Inst Choice, Sydney, NSW, Australia..
    Lancsar, Emily
    Monash Univ, Ctr Hlth Econ, Melbourne, Vic, Australia..
    Witteman, Cilia L. M.
    Radboud Univ Nijmegen, Behav Sci Inst, Nijmegen, Netherlands..
    Bonsel, Gouke
    EuroQol Fdn, Rotterdam, Netherlands..
    Bindels, Patrick
    Erasmus MC Univ Med Ctr, Dept Gen Practice, Rotterdam, Netherlands..
    The impact of vaccination and patient characteristics on influenza vaccination uptake of elderly people: A discrete choice experiment2018In: Vaccine, ISSN 0264-410X, E-ISSN 1873-2518, Vol. 36, no 11, p. 1467-1476Article in journal (Refereed)
    Abstract [en]

    Objectives: To improve information for patients and to facilitate a vaccination coverage that is in line with the EU and World Health Organization goals, we aimed to quantify how vaccination and patient characteristics impact on influenza vaccination uptake of elderly people.

    Methods: An online discrete choice experiment (DCE) was conducted among 1261 representatives of the Dutch general population aged 60 years or older. In the DCE, we used influenza vaccination scenarios based on five vaccination characteristics: effectiveness, risk of severe side effects, risk of mild side effects, protection duration, and absorption time. A heteroscedastic multinomial logit model was used, taking scale and preference heterogeneity (based on 19 patient characteristics) into account.

    Results: Vaccination and patient characteristics both contributed to explain influenza vaccination uptake. Assuming a base case respondent and a realistic vaccination scenario, the predicted uptake was 58%. One-way changes in vaccination characteristics and patient characteristics changed this uptake from 46% up to 61% and from 37% up to 95%, respectively. The strongest impact on vaccination uptake was whether the patient had been vaccinated last year, whether s/he had experienced vaccination side effects, and the patient's general attitude towards vaccination.

    Conclusions: Although vaccination characteristics proved to influence influenza vaccination uptake, certain patient characteristics had an even higher impact on influenza vaccination uptake. Policy makers and general practitioners can use these insights to improve their communication plans and information regarding influenza vaccination for individuals aged 60 years or older. For instance, physicians should focus more on patients who had experienced side effects due to vaccination in the past, and policy makers should tailor the standard information folder to patients who had been vaccinated last year and to patient who had not.

  • 47.
    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.

  • 48.
    Eriksson, Stefan
    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.
    Helgesson, Gert
    Stockholm Centre for Healthcare Ethics, Karolinska institutet.
    Time to stop talking about ‘predatory journals’2018In: Learned Publishing, ISSN 0953-1513, E-ISSN 1741-4857, Vol. 31, no 2, p. 181-183Article in journal (Other academic)
    Abstract [en]

    Key points:

    • The term ‘predatory journal’ hides a wide range of scholarly publishing misconduct.

    • The term ‘predatory journal’ unhelpfully bundles misconduct with poor quality.

    • The term ‘predatory journal’ blinds us to important possibilities, needs, and questions arising in the developing scholarly landscape.

    • The current scholarly publishing environment cannot rely on such a simplified classification of journals into predatory or not.

  • 49.
    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.

  • 50.
    Godskesen, Tove
    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. Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Petri, Suzanne
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    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.
    Halkoaho, Arja
    Tampere University of Applied Sciences, Finland.
    Mangset, Margrete
    Oslo universitetssykehus, Oslo University Hospital, Norway.
    Pirinen, Merja
    University of Eastern Finland, Kuopio, Finland.
    Engelbak Nielsen, Zandra
    Rigshospitalet, Copenhagen University Hospital, Denmark.
    When Nursing Care and Clinical Trials Coincide:: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges2018In: Journal of Empirical Research on Human Research Ethics, ISSN 1556-2646, E-ISSN 1556-2654Article in journal (Refereed)
    Abstract [en]

    This study investigated the kinds of ethical challenges experienced by nurses in oncology and hematology when nursing care and research overlap in clinical trials, and how the nurses handle such challenges. Individual interviews with 39 nurses from Sweden, Denmark, and Finland indicated that all nurses were positive about research, considering it essential for developing the best care. Ethical challenges exist, however; the most difficult were associated with the end-of-life patients, no longer responsive to standard therapy, who eagerly volunteer for cutting-edge drug trials in the hope of gaining therapeutic benefit. Many nurses lacked systematic strategies for addressing such challenges but found support from their nursing colleagues and relied on the research protocols to guide them.

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