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  • 1. 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.

  • 2.
    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.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Höglund, Anna
    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 1472-6939Article in journal (Refereed)
  • 3.
    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.
    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 physiciansand nurses working in hematology and oncology care2018In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939Article in journal (Refereed)
  • 4.
    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.

  • 5.
    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)
  • 6.
    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.

  • 7.
    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)
  • 8.
    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)
  • 9.
    Godskesen, Tove E.
    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 resurser.2018In: 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.

  • 10.
    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.

  • 11.
    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.

  • 12.
    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.

  • 13.
    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.

  • 14.
    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.

  • 15. 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.

  • 16. 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.

  • 17.
    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.

  • 18.
    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).

  • 19.
    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)
  • 20.
    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.

  • 21.
    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. 

  • 22.
    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?

  • 23.
    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.

  • 24.
    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.

  • 25. 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 sjukvården.2018 (ed. 1)Book (Other academic)
  • 26. 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.

  • 27. 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.

  • 28.
    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 (Refereed)
    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.

  • 29. 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.

  • 30.
    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.

  • 31.
    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)
  • 32.
    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.

  • 33.
    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.

  • 34.
    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.
    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.

  • 35. Middleton, Anna
    et al.
    Niemiec, Emilia
    Prainsack, Barbara
    Bobe, Jason
    Farley, Lauren
    Steed, Claire
    Smith, James
    Bevan, Paul
    Bonhomme, Natasha
    Kleiderman, Erika
    Thorogood, Adrian
    Schickhardt, Christoph
    Garattini, Chiara
    Vears, Danya
    Littler, Katherine
    Banner, Natalie
    Scott, Erick
    Kovalevskaya, Nadezda V
    Levin, Elissa
    Morley, Katherine I
    Howard, Heidi 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.
    'Your DNA, Your Say': global survey gathering attitudes toward genomics2018In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828XArticle in journal (Refereed)
    Abstract [en]

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

  • 36.
    Lind, Anna-Sara
    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.
    A new Swedish legal framework for handling alleged misconduct2017Other (Other (popular science, discussion, etc.))
  • 37. Racine, Eric
    et al.
    Dubljevic, Veljko
    Jox, Ralf J.
    Baertschi, Bernard
    Christensen, Julia F.
    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.
    Jotterand, Fabrice
    Kahane, Guy
    Muller, Sabine
    Can Neuroscience contribute to practical ethics?: A critical review and discussion of the methodological and translational challenges of the neuroscience of ethics2017In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 2017, no 31, p. 328-337, article id 5Article in journal (Refereed)
    Abstract [en]

    Neuroethics is an interdisciplinary field that arose in response to novel ethical challenges posed by advances in neuroscience. Historically, neuroethics has provided an opportunity to synergize different disciplines, notably proposing a two-way dialogue between an "ethics of neuroscience" and a "neuroscience of ethics". However, questions surface as to whether a "neuroscience of ethics" is a useful and unified branch of research and whether it can actually inform or lead to theoretical insights and transferable practical knowledge to help resolve ethical questions. In this article, we examine why the neuroscience of ethics is a promising area of research and summarize what we have learned so far regarding its most promising goals and contributions. We then review some of the key methodological challenges which may have hindered the use of results generated thus far by the neuroscience of ethics. Strategies are suggested to address these challenges and improve the quality of research and increase neuroscience's usefulness for applied ethics and society at large. Finally, we reflect on potential outcomes of a neuroscience of ethics and discuss the different strategies that could be used to support knowledge transfer to help different stakeholders integrate knowledge from the neuroscience of ethics. 

  • 38.
    Soekhai, V
    et al.
    Erasmus Univ, Med Ctr, Rotterdam, Netherlands..
    Whichello, C.
    Erasmus Univ, Rotterdam, Netherlands..
    Levitan, B.
    Janssen R&D, Titusville, NJ USA..
    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.
    Hammad, T.
    Merck & Co Inc, N Wales, PA 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. Erasmus Univ, Rotterdam, Netherlands..
    van Overbeeke, E.
    Katholieke Univ Leuven, Leuven, Belgium..
    Russo, S.
    European Inst Oncol, Milan, Italy..
    Mohamed, A.
    Bayer, Whippany, NJ USA..
    Hermann, R.
    AstraZeneca, Wilmington, DE USA..
    Huys, I
    Katholieke Univ Leuven, Leuven, Belgium..
    Patadia, V
    Sanofi, Bridgewater, NJ USA..
    Juhaeri, J.
    Sanofi, Bridgewater, NJ USA..
    de Bekker-Grob, E.
    Compendium Of Methods For Measuring Patient Preferences In Medical Treatment2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A684-A685Article in journal (Other academic)
  • 39.
    van Overbeeke, E.
    et al.
    Univ Leuven, Leuven, Belgium..
    Whichello, C.
    Erasmus Univ, Rotterdam, Netherlands..
    Janssens, R.
    Univ Leuven, Leuven, Belgium..
    de Bekker-Grob, E.
    Erasmus Univ, 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.
    Levitan, B.
    Janssen R&D, Titusville, NJ USA..
    Kuebler, J.
    QSciCon, Marburg, Germany..
    Russo, S.
    European Inst Oncol, Milan, Italy..
    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.
    Cleemput, Y.
    Belgian Hlth Care Knowledge Inst KCE, Brussels, Belgium..
    Juhaeri, J.
    Sanofi, Bridgewater, NJ USA..
    Huys, I
    Katholieke Univ Leuven, Leuven, Belgium..
    Conditions And Contextual Factors That Influence The Utility And Application Of Patient Preference Studies: A Study Combining Literature And Focus Groups2017In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 20, no 9, p. A690-A691Article in journal (Other academic)
  • 40.
    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. Riga Stradins University, Latvia.
    Country report: an overview of animal protection in Latvia2017In: Scritti su etica e legislazione medica e veterinaria / [ed] Il comitato scientifico del Progetto, Bari: Cacucci Editore , 2017, p. 149-158Chapter in book (Other academic)
  • 41.
    Niemiec, Emilia
    et al.
    Univ Bologna, Interdept Ctr Res Hist Philosophy & Sociol Law &, I-40121 Bologna, Italy.; Univ Turin, Dept Law, I-10153 Turin, Italy.; Leibniz Univ Hannover, Ctr Eth & Law Life Sci, Inst Philosophy, D-30159 Hannover, Germany.
    Kalokairinou, Louiza
    Katholieke Univ Leuven, Ctr Biomed Eth & Law, Dept Publ Hlth & Primary Care, B-3000 Leuven, Belgium.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Current ethical and legal issues in health-related direct-to-consumer genetic testing2017In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828X, Vol. 14, no 5, p. 433-445Article, review/survey (Refereed)
  • 42.
    Aarum Hansen, Heidi
    et al.
    Østfold University College.
    Björktomta, Siv-Britt
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Sociology.
    Svalastog, Anna Lydia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Digital society generates new challenges on Child Welfare Services2017In: Croatian Medical Journal, ISSN 0353-9504, E-ISSN 1332-8166, ISSN ISSN 0353-9504, Vol. 58, no feb, p. 80-83, article id 2017.58.80Article in journal (Refereed)
    Abstract [en]

    Digital society has created a new situation that challenges the present discourse on public services. Since it is only a recent phenomenon, digital society has not yet been in-cluded in the broader filed of social work education and practice. In the present text, we focus on casework with children. The examples described in the text are taken from Scandinavian experiences and reflect our background and practice in social work with children. However, we dare to say that the situation is more or less the same in the rest of Europe, as illustrated by the presented social work examples and references from wider European context.

  • 43.
    Middleton, Anna
    et al.
    Wellcome, Connecting Sci, Soc & Eth Res Grp, Genome Campus, Cambridge, England..
    Mendes, Alvaro
    Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Oporto, Portugal.;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, Ctr Predict & Prevent Genet CGPP, Oporto, Portugal..
    Benjamin, Caroline M.
    Univ Cent Lancashire, Sch Community Hlth & Midwifery, Preston, Lancs, England.;Liverpool Womens NHS Hosp Trust, Liverpool, Merseyside, 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.
    Direct-to-consumer genetic testing: where and how does genetic counseling fit?2017In: Personalized Medicine, ISSN 1741-0541, E-ISSN 1744-828X, Vol. 14, no 3, p. 249-257Article in journal (Refereed)
    Abstract [en]

    Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to 'research' results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being 'direct-to-consumer' much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces.

  • 44.
    Budin-Ljosne, Isabelle
    et al.
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway..
    Teare, Harriet J. A.
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Kaye, Jane
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Beck, Stephan
    UCL, UCL Canc Inst, London, England..
    Bentzen, Heidi Beate
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.;Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway..
    Caenazzo, Luciana
    Univ Padua, Padua, Italy..
    Collett, Clive
    Hlth Res Author, London, England..
    D'Abramo, Flavio
    Free Univ Berlin, Focus Area DynAge, Berlin, Germany..
    Felzmann, Heike
    NUI Galway, Ctr Bioeth Res & Anal, Galway, Ireland..
    Finlay, Teresa
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Javaid, Muhammad Kassim
    Univ Oxford, Nuffield Dept Orthopaed Rheumatol & Musculoskelet, NIHR Musculoskeletal Biomed Res Unit, Oxford, England..
    Jones, Erica
    UCL, UCL Canc Inst, London, England..
    Katic, Visnja
    Univ Rijeka, Sch Med, Rijeka, Croatia..
    Simpson, Amy
    Genet Alliance UK, London, England..
    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. EURAC, Ctr Biomed, Bolzano, Italy..
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research2017In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, article id 4Article in journal (Refereed)
    Abstract [en]

    Background: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

  • 45. de Bekker-Grob, Esther
    et al.
    Berlin, Conny
    Levitan, Bennet
    Raza, Karim
    Christoforidi, Kalliopi
    Cleemput, Irina
    Pelouchova, Jana
    Enzmann, Harald
    Cook, Nigel
    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.
    Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project2017In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 10, no 3, p. 263-266Article in journal (Refereed)
  • 46.
    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
    Karolinska Institutet.
    Hantering av oredlighet i forskning: Kan förväntningar på en ny modell uppfyllas?2017In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, p. 67-79Article in journal (Refereed)
  • 47.
    Persson de Fine Licht, Karl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Chalmers Univ Technol, Res Inst Sweden RISE, Gothenburg, Sweden.;Univ Gothenburg, Gothenburg, Sweden.
    Hostile urban architecture: A critical discussion of the seemingly offensive art of keeping people away2017In: Etikk i praksis, ISSN 1890-3991, E-ISSN 1890-4009, Vol. 11, no 2, p. 27-44Article in journal (Refereed)
    Abstract [en]

    For many years, some urban architecture has aimed to exclude unwanted groups of people from some locations. This type of architecture is called "defensive" or "hostile" architecture and includes benches that cannot be slept on, spikes in the ground that cannot be stood on, and pieces of metal that hinder one's ability to skateboard. These defensive measures have sparked public outrage, with many thinking such measures lead to suffering, are disrespectful, and violate people's rights. In this paper, it is argued that these views are difficult to defend and that much more empirical research on the topic is needed.

  • 48.
    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 University College.
    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.
    "I have a lot of pills in my bag, you know": Institutional Norms in the Provision of Hope in Phase 1 Clinical Cancer Trials2017In: Journal of Oncology Pharmacy Practice, ISSN 1078-1552, E-ISSN 1477-092X, Vol. 13, no 10, p. 679-682Article in journal (Refereed)
    Abstract [en]

    Hope of a miracle cure is often an important motive for participating in phase 1 clinical cancer trials. Communication of hope may stimulate patients to participate and may enhance their quality of life; however, it may also deprive them of an opportunity to spend the remainder of their lives as they wish. Much depends on the kind of hope involved. This article outlines three forms of hope entertained by trial participants that, in various ways, are triggered, enhanced or modified by institutional norms within health care. This has normative as well as clinical implications; the information threshold for informed consent to enter phase 1 trials should be higher than that for consenting to medical treatment or entering randomised, controlled, phase 3 trials, clarifying the demarcation between clinical treatment and research. A simultaneous care model that integrates both trial participation and palliative care could and should also be offered; this is in line with the recommendations of the WHO, which state that palliative care should be applicable early in the course of illness. 

  • 49.
    Slokenberga, Santa
    et al.
    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.
    Merino Martinez, Roxana
    Karolinska institutet.
    Reichel, Jane
    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 Law, Department of Law.
    Legal and ethical governance of intercontinental biobanking: Some experiences from a H2020 project2017In: Förvaltningsrättslig Tidskrift, ISSN 0015-8585, no 1, p. 169-192Article in journal (Refereed)
    Abstract [en]

    Biobanks exist today on every continental though they have evolved differently in different parts of the world. The African States have been involved in biobank research for a considerable time but for decades large volumes of data and samples have been transferred outside the continent to developed countries for their storage and eventual further use, thus affecting the capacity-building and development for researchers in Africa. Currently, there are ongoing projects to build biobank research capacity within the regions where they are at an early developmental stage and collaborate transnationally in that regard. One of them is B3Africa, an EU-funded project that aims to facilitate collaboration between selected EU Member States and the African States and enhance mutual data and sample exchange between the EU and African States. Within the project, an informatics platform, the eB3Kit, is being developed. The platform integrates available open-source software, services and tools for biobanking and bioinformatics. Further, an ethical and legal framework for collaboration is being drafted that may bridge biobank research activities in the EU Member States and the African States. This article focuses on the latter, the ethical and legal framework.

  • 50. Kalokairinou, L.
    et al.
    Howard, H. 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.
    Slokenberga, S.
    Fisher, E.
    Flatscher-Thoni, M.
    Hartlev, M.
    van Hellemondt, R.
    Juskevicius, J.
    Kapelenska-Pregowska, J.
    Kovac, P.
    Lovrecic, L.
    Nys, H.
    de Paor, A.
    Phillips, A.
    Prudil, L.
    Rial-Sebbag, E.
    Romeo Casabona, C. M.
    Sandor, J.
    Schuster, A.
    Soini, S.
    Sovig, K. H.
    Stoffel, D.
    Titma, T.
    Trokanas, T.
    Borry, P.
    Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape2017In: J Community GenetArticle in journal (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.

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