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  • 1.
    Ahlberg, Beth Maina
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Internationell mödra- och barnhälsovård (IMCH).
    Njoroge, Kezia Muthoni
    School of Health, Community of Education Studies, Northumbria University, Newcastle upon Tyne, UK.
    'Not men enough to rule!': politicization of ethnicities and forcible circumcision of Luo men during the postelection violence in Kenya2013Inngår i: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 18, nr 5, s. 454-468Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    As a contribution to ongoing research addressing sexual violence in war and conflict situations in the Democratic Republic of Congo, Kenya and Rwanda, this paper argues that the way sexual violence intersects with other markers of identity, including ethnicity and class, is not clearly articulated. Male circumcision has been popularized, as a public health strategy for prevention of HIV transmission, although evidence of its efficacy is disputable and insufficient attention has been given to the social and cultural implications of male circumcision.

    Methods

    This paper draws from media reporting and the material supporting the prosecutor at the International Criminal Court case against four Kenyans accused of crimes against humanity, to explore the postelection violence, especially forcible male circumcision.

    Results

    During the postelection violence in Kenya, women were, as in other conflict situations, raped. In addition, men largely from the Luo ethnic group were forcibly circumcised. Male circumcision among the Gikuyu people is a rite of passage, but when forced upon the Luo men, it was also associated with cases of castration and other forms of genital mutilation. The aim appears to have been to humiliate and terrorize not just the individual men, but their entire communities. The paper examines male circumcision and questions why a ritual that has marked a life-course transition for inculcating ethical analysis of the self and others, became a tool of violence against men from an ethnic group where male circumcision is not a cultural practice.

    Conclusion

    The paper then reviews the persistence and change in the ritual and more specifically, how male circumcision has become, not just a sexual health risk, but, contrary to the emerging health discourse and more significantly, a politicized ethnic tool and a status symbol among the Gikuyu elite. In the view of the way male circumcision was perpetrated in Kenya, we argue it should be considered as sexual violence, with far-reaching consequences for men's physical and mental health.

  • 2.
    Ahlzen, Rolf
    Karlstads universitet, Fakulteten för samhälls- och livsvetenskaper, Avdelningen för hälsa och miljö.
    Illness as unhomelike being-in-the-world?: Phenomenology and medical practice2011Inngår i: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 14, nr 3, s. 323-331Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Scientific medicine has been successful by ways of an ever more detailed understanding and mastering of bodily functions and dysfunctions. Biomedical research promises new triumphs, but discontent with medical practice is all around. Since several decades this has been acknowledged and discussed. The philosophical traditions of phenomenology and hermeneutics have been proposed as promising ways to approach medical practice, by ways of a richer understanding of the meaning structures of health and illness. In 2000, Swedish philosopher Fredrik Svenaeus published a book where he proposes that the phenomenological hermeneutics of Martin Heidegger and also the reflections on health and illness of Hans-Georg Gadamer offer important ways to approach the nature of medicine. In particular, Svenaeus argues that the goal of medicine is to promote and restore health, and that health ought to be seen as "homelike being-in-the-world". Unhealth, illness, consequently should be understood as a situation where a person's "being-in-the-world" in characterized by that lack of the rhythm, balance and "tune" of everyday living that characterizes not "being at home". In this article, Svenaeus' position is briefly outlined. Questions are raised whether "unhomelikeness" is to be seen as a metaphor, and, if so, if it is a fruitful such. Furthermore, I discuss whether or not a discourse on health and illness in these terms may be misleading in a situation where the ontological presuppositions of Heidegger are lost out of sight and the popular understanding of health psychology predominates. I also approach the question whether Svenaeus' assumptions may inadvertently lead us to an unjustifiably broad understanding of the tasks of medicine. It is finally concluded that Svenaeus phenomenological and hermeneutical approach is both interesting and promising. There are, however, several questions that ought to be pursued further, and the step from philosophical analysis to everyday clinical discourse may be unexpectedly long and risky.

  • 3.
    Ambagtsheer, Frederike
    et al.
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Gunnarson, Martin
    Södertörns högskola, Institutionen för kultur och lärande, Centrum för praktisk kunskap.
    de Jong, Jessica
    Central Division of the National Police, the Netherlands.
    Lundin, Susanne
    Lund University.
    van Balen, Linde
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Orr, Zvika
    The Hebrew University of Jerusalem, Israel.
    Byström, Ingela
    Lund University.
    Weimar, Willem
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Trafficking in Human Beings for the Purpose of Organ Removal: A Case Study Report2016Inngår i: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 4.
    Ambagtsheer, Frederike
    et al.
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Gunnarson, Martin
    Södertörns högskola, Institutionen för kultur och lärande, Centrum för praktisk kunskap.
    van Balen, Linde
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Ivanovski, Ninoslav
    University of St. Cyril and Methodius, Macedonia.
    Lundin, Susanne
    Lund University.
    Byström, Ingela
    Lund University.
    Weimar, Willem
    Erasmus MC University Hospital Rotterdam, the Netherlands.
    Organ Recipients who Paid for Kidney Transplantation abroad: A Report2016Inngår i: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 5. Asmussen, L.
    et al.
    Nyren, Andersson M.
    Kane, Bridget
    Karlstads universitet, Fakulteten för humaniora och samhällsvetenskap (from 2013), Handelshögskolan (from 2013).
    The Experience of Healthcare Workers Following the Implementation of an IT-System in a Home for the Aged2017Inngår i: Irish Journal of Medical Science, ISSN 0021-1265, E-ISSN 1863-4362, Vol. 186, nr Suppl.4, s. S161-S161Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    We report on how health personnel at a home for the aged wereaffected by the introduction of an IT-system to help when nursedocumentation of patient activity and condition. The design of ITsystems for documentation by care-givers in healthcare is topicalbecause of the challenges posed by the need for high levels of safety,confidentiality and ethical responsibility. Health care staff work underextreme time-pressure including emergency situations. It is criticallyimportant to have IT-systems that are easy to use: to find informationand make records.This qualitative study utilises observation and interviews to gaindeep understanding. Observation data guide the interviews. Interviewswith nurses (10) and an IT analyst (1) are reported.Lack of time is a contributing factor as to why health personnel donot have a positive attitude to the use of IT documentation systems.Nurses feel that the lack of time does not afford them the opportunityto learn properly about the IT-system, and many of the staff haveworked with paper for over 20 years. It is also seen as a problem thatthere are many steps (clicks) before one can make a note or findinformation. One of the advantages reported with using IT-systems isthat all information is at one site. Everything is safety copied andconfidentiality is easier to secure.Using IT documentation systems facilitates the use of careplansthat are individualized for patient needs, instead treating all patientswith a particular disease, e.g. dementia, in the same way

  • 6.
    Axelsson, Inge
    Mittuniversitetet, Fakulteten för humanvetenskap, Avdelningen för omvårdnad.
    Hårdnad konkurrens ger dopad forskning2016Annet (Annet (populærvitenskap, debatt, mm))
  • 7.
    Axelsson, Per
    Umeå universitet, Humanistiska fakulteten, Centrum för samisk forskning (CeSam).
    Preconceived opinions: Iñupiat and Swedish Sami populations in polio research2012Inngår i: Rivers to cross: Sami land use and the human dimension / [ed] Peter Sköld & Krister Stoor, Umeå: Vaartoe, Centrum för samisk forskning, Umeå universitet , 2012, s. 169-177Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 8.
    Ballantyne, Angela
    et al.
    University of Otago Wellington, Bioeth, Wellington, New Zealand.
    Eriksson, Stefan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Research ethics revised: The new CIOMS guidelines and the World Medical Association Declaration of Helsinki in context2019Inngår i: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 33, nr 3, s. 310-311Artikkel i tidsskrift (Annet vitenskapelig)
  • 9.
    Bea, Sara
    Science Technology and Innovation Studies, The University of Edinburgh, UK.
    No Heroics, Please: Mapping Deceased Donation Practices in a Catalan Hospital2017Doktoravhandling, monografi (Annet vitenskapelig)
    Abstract [en]

    This thesis presents an in-depth ethnographic mapping of deceased donation in a Catalan hospital. A unique site in terms of leading edge technoscientific practices, high rates of donation and its consolidated specialised team of transplant coordinators (TCs). The thesis situates donation as an embedded medical practice and traces the practicalities and specificities of making donation a possibility at the hospital. The empirical accounts offer a distinctive contribution that complements and challenges existing social sciences literature about donation. The latter have predominantly focused on donation as a controversial practice through highlighting the emotional experiences of donors’ families and individual medical practitioners involved. This empirical investigation mobilises, and further develops, STS material semiotics tools to provide an account of donation enacted as both procurement and healthcare. Ethnographic insights illustrate the shifting processes of mutual inclusion and exclusion that underpin the trajectory of integrating donation as a routinized hospital practice, along the recurring set of enduring tensions. This is achieved by following the work of TCs along the stages of donor detection, evaluation, maintenance, consent request and organ extraction. Crucially, the analytical focus decenters the individual actors’ perspectives, broadening the scope of the inquiry and making visible the complex sociomaterial arrangements that take place, inside and outside the hospital, which are rendered as a gradual process of assembling donations. Families’ consent to donation is essential but it is decentered, it is neither that which starts a donation process nor the only factor that contributes to the assembling of a donation process. Unlike available anthropological and sociological studies of donation this work is not about documenting the reductionist transition from patient to donor, whole to parts, person to thing and denouncing the fall from subject to object reified in donation practices. The emphasis here is on tracing the overlap between donors as patients, thus the analysis shows the shifting enactments of the embedded donor/patient configuration, which includes the donor/body, donor/person and donor/corpse figures simultaneously along the donation process. The intervention of bodies as active entities is examined through a speculative and pragmatic elucidation on the situated and relational enactments of responsive bodies and organs. This thesis contributes to contemporary re/articulations of materiality and agency through the lens of distributed joint action and entangled actors from a nonanthropomorphic stance. The research also contributes to current policy debates in the UK, and in Scotland in particular, that propose to tackle the national problem of low donation rates with a legislative move to an opt-out system for donation. It offers robust empirical evidence to contest the dominant organ shortage problematisation that is reduced to the legal polarity of either opting in or out of donation. I suggest that questions about increasing donation rates cannot be restricted to the domain of individual choice as this excludes the situated medical practices that enable the choice of donation in the first place.

  • 10. Bell, Jessica
    et al.
    Ancillotti, Mirko
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Coathup, Victoria
    Coy, Sarah
    Rigter, Tessel
    Tatum, Travis
    Grewal, Jasjote
    Akcesme, Faruk Berat
    Brkić, Jovana
    Causevic-Ramosevac, Anida
    Milovanovic, Goran
    Nobile, Marianna
    Pavlidis, Cristiana
    Finlay, Teresa
    Kaye, Jane
    Challenges and opportunities for ELSI early career researchers2016Inngår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 17, artikkel-id 37Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline.

    MAIN TEXT: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics.

    CONCLUSION: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.

  • 11. Benatar, Michael
    et al.
    Stanislaw, Christine
    Reyes, Eliana
    Hussain, Sumaira
    Cooley, Anne
    Fernandez, Maria Catalina
    Dauphin, Danielle D.
    Michon, Sara-Claude
    Andersen, Peter M.
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    Wuu, Joanne
    Presymptomatic ALS genetic counseling and testing: Experience and recommendations2016Inngår i: Neurology, ISSN 0028-3878, E-ISSN 1526-632X, Vol. 86, nr 24, s. 2295-2302Artikkel, forskningsoversikt (Fagfellevurdert)
    Abstract [en]

    Remarkable advances in our understanding of the genetic contributions to amyotrophic lateral sclerosis (ALS) have sparked discussion and debate about whether clinical genetic testing should routinely be offered to patients with ALS. A related, but distinct, question is whether presymptomatic genetic testing should be offered to family members who may be at risk for developing ALS. Existing guidelines for presymptomatic counseling and testing are mostly based on small number of individuals, clinical judgment, and experience from other neurodegenerative disorders. Over the course of the last 8 years, we have provided testing and 317 genetic counseling sessions (including predecision, pretest, posttest, and ad hoc counseling) to 161 first-degree family members participating in the Pre-Symptomatic Familial ALS Study (Pre-fALS), as well as testing and 75 posttest counseling sessions to 63 individuals with familial ALS. Based on this experience, and the real-world challenges we have had to overcome in the process, we recommend an updated set of guidelines for providing presymptomatic genetic counseling and testing to people at high genetic risk for developing ALS. These recommendations are especially timely and relevant given the growing interest in studying presymptomatic ALS.

  • 12.
    Bertilsson, Emelie
    et al.
    Kalmar County Hospital.
    Semark, Birgitta
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV). Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för medicin och optometri (MEO).
    Schildmeijer, Kristina
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    Bremer, Anders
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    Carlsson, Jörg
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    Usage of Do-not-attempt-to resuscitate-orders in a Swedish community hospital: patient involvement, documentation and compliance2018Inngår i: Resuscitation, ISSN 0300-9572, E-ISSN 1873-1570, Vol. 130, nr s1, s. e93-e94Artikkel i tidsskrift (Fagfellevurdert)
  • 13.
    Bessani, Alysson
    et al.
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Brandt, Joergen
    Humboldt Univ, Berlin, Germany..
    Bux, Marc
    Humboldt Univ, Berlin, Germany..
    Cogo, Vinicius
    Univ Lisbon, Fac Ciencias, LaSIGE, Lisbon, Portugal..
    Dimitrova, Lora
    Charite, Berlin, Germany..
    Dowling, Jim
    KTH Royal Inst Technol, Stockholm, Sweden..
    Gholami, Ali
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hakimzadeh, Kamal
    KTH Royal Inst Technol, Stockholm, Sweden..
    Hummel, Micheal
    Charite, Berlin, Germany..
    Ismail, Mahmoud
    KTH Royal Inst Technol, Stockholm, Sweden..
    Laure, Erwin
    KTH Royal Inst Technol, Stockholm, Sweden..
    Leser, Ulf
    Humboldt Univ, Berlin, Germany..
    Litton, Jan-Eric
    Karolinska Inst, Solna, Sweden..
    Martinez, Roxanna
    Karolinska Inst, Solna, Sweden..
    Niazi, Salman
    KTH Royal Inst Technol, Stockholm, Sweden..
    Reichel, Jane
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Zimmermann, Karin
    Charite, Berlin, Germany..
    BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets2016Inngår i: BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 2016, s. 89-105Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Biobanks store and catalog human biological material that is increasingly being digitized using next-generation sequencing (NGS). There is, however, a computational bottleneck, as existing software systems are not scalable and secure enough to store and process the incoming wave of genomic data from NGS machines. In the BiobankCloud project, we are building a Hadoop-based platform for the secure storage, sharing, and parallel processing of genomic data. We extended Hadoop to include support for multi-tenant studies, reduced storage requirements with erasure coding, and added support for extensible and consistent metadata. On top of Hadoop, we built a scalable scientific workflow engine featuring a proper workflow definition language focusing on simple integration and chaining of existing tools, adaptive scheduling on Apache Yarn, and support for iterative dataflows. Our platform also supports the secure sharing of data across different, distributed Hadoop clusters. The software is easily installed and comes with a user-friendly web interface for running, managing, and accessing data sets behind a secure 2-factor authentication. Initial tests have shown that the engine scales well to dozens of nodes. The entire system is open-source and includes pre-defined workflows for popular tasks in biomedical data analysis, such as variant identification, differential transcriptome analysis using RNA-Seq, and analysis of miRNA-Seq and ChIP-Seq data.

  • 14. Bjugn, Roger
    et al.
    Farisco, Michele
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Hostmaelingen, Njal
    Simeon-Dubach, Daniel
    Petrini, Carlo
    What Are Some of the ELSI Challenges of International Collaborations Involving Biobanks, Global Sample Collection, and Genomic Data Sharing and How Should They Be Addressed?2015Inngår i: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 13, nr 2, s. 70-71Artikkel i tidsskrift (Fagfellevurdert)
  • 15. Borry, Pascal
    et al.
    Cornel, Martina C
    Howard, Heidi C
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market.2010Inngår i: Journal of community genetics, ISSN 1868-310X, Vol. 1, nr 3, s. 101-106Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) recent changes in the DTC GT market; and (4) the recent events that may have an impact on the regulatory oversight of DTC genetic testing and the future evolution of this market. This review of factors suggests that despite the possibility of a change of business model as well as increased regulation, the commercialization of genetic testing is here to stay. As such it is important to pay close attention not only to the science underlying these tests but also to the ethical, legal, and social issues.

  • 16. Borry, Pascal
    et al.
    Henneman, Lidewij
    Lakeman, Phillis
    ten Kate, Leo P
    Cornel, Martina C
    Howard, Heidi C
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Preconceptional genetic carrier testing and the commercial offer directly-to-consumers.2011Inngår i: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, nr 5, s. 972-7Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Recently, a number of commercial companies are offering preconceptional carrier tests directly-to-consumers. This offer raises a number of concerns and issues above and beyond those encountered with preconceptional tests offered within the traditional health care setting. In order to bring some of these issues to light and to initiate dialogue on this topic, this article discusses the following issues: the current offer of preconceptional carrier tests (until the end of 2010) through online commercial companies; the implications for the informed consent procedure and the need for good information; the need for medical supervision and follow-up; and the appropriate use of existing resources. The article concludes with some reflections about the potential sustainability of the offer of preconceptional carrier tests directly-to-consumers.

  • 17. Borry, Pascal
    et al.
    Howard, Heidi C
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Sénécal, Karine
    Avard, Denise
    Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.2010Inngår i: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, nr 1, s. 51-9Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    More and more companies are advertising and selling genetic tests directly to consumers. Considering the ethical, legal, and psychological concerns surrounding genetic testing in minors, a study of companies' websites was performed in order to describe and analyze their policies with respect to this issue. Of the 29 companies analyzed, 13 did not provide any information about this matter, eight companies allowed genetic testing upon parental request, four companies stated that their website is not directed to children under 18 years, and four companies suggested that in order to be tested, applicants should have reached the age of legal majority. If private companies offer genetic tests which are also offered in a clinical setting, can they be expected to adhere to the existing clinical guidelines with regard to these tests? If so, a certain ambiguity exists. Many companies are emphasizing in their disclaimers that their services are not medical services and should not be used as a basis for making medical decisions. Nonetheless, it remains debatable whether genetic testing in minors would be appropriate in this context. In line with the Advisory Committee on Genetic Testing, the Human Genetics Commission addressed the problem of non-consensual testing and recommended not to supply genetic testing services directly to those under the age of 16 or to those not able to make a competent decision regarding testing.

  • 18. Borry, Pascal
    et al.
    Rusu, Olivia
    Dondorp, Wybo
    De Wert, Guido
    Knoppers, Bartha Maria
    Howard, Heidi Carmen
    Anonymity 2.0: direct-to-consumer genetic testing and donor conception.2014Inngår i: Fertility and Sterility, ISSN 0015-0282, E-ISSN 1556-5653, Vol. 101, nr 3, s. 630-2Artikkel i tidsskrift (Fagfellevurdert)
  • 19. Borry, Pascal
    et al.
    Rusu, Olivia
    Howard, Heidi C
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Genetic testing: anonymity of sperm donors under threat.2013Inngår i: Nature, ISSN 0028-0836, E-ISSN 1476-4687, Vol. 496, nr 7444, s. 169-Artikkel i tidsskrift (Fagfellevurdert)
  • 20. Borry, Pascal
    et al.
    van Hellemondt, Rachel E
    Sprumont, Dominique
    Jales, Camilla Fittipaldi Duarte
    Rial-Sebbag, Emmanuelle
    Spranger, Tade Matthias
    Curren, Liam
    Kaye, Jane
    Nys, Herman
    Howard, Heidi
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Legislation on direct-to-consumer genetic testing in seven European countries.2012Inngår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 20, nr 7, s. 715-21Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    An increasing number of private companies are now offering direct-to-consumer (DTC) genetic testing services. Although a lot of attention has been devoted to the regulatory framework of DTC genetic testing services in the USA, only limited information about the regulatory framework in Europe is available. We will report on the situation with regard to the national legislation on DTC genetic testing in seven European countries (Belgium, the Netherlands, Switzerland, Portugal, France, Germany, the United Kingdom). The paper will address whether these countries have legislation that specifically address the issue of DTC genetic testing or have relevant laws that is pertinent to the regulatory control of these services in their countries. The findings show that France, Germany, Portugal and Switzerland have specific legislation that defines that genetic tests can only be carried out by a medical doctor after the provision of sufficient information concerning the nature, meaning and consequences of the genetic test and after the consent of the person concerned. In the Netherlands, some DTC genetic tests could fall under legislation that provides the Minister the right to refuse to provide a license to operate if a test is scientifically unsound, not in accordance with the professional medical practice standards or if the expected benefit is not in balance with the (potential) health risks. Belgium and the United Kingdom allow the provision of DTC genetic tests.

  • 21.
    Bradby, Hannah
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Sociologiska institutionen.
    (Imaginary) healthcare heroes – Ms Conscientious (#2 in an occasional series)2015Annet (Annet (populærvitenskap, debatt, mm))
  • 22.
    Branje, Johanna
    et al.
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    Josefsson, Marielle
    Linnéuniversitetet, Fakulteten för Hälso- och livsvetenskap (FHL), Institutionen för hälso- och vårdvetenskap (HV).
    När hjärtat stannar: En kvalitativ intervjustudie om sjuksköterskors upplevelser av att vårda vid ett hjärtstopp på vårdavdelningar.2017Independent thesis Basic level (degree of Bachelor), 10 poäng / 15 hpOppgave
    Abstract [sv]

    Bakgrund: När en patient drabbas av hjärtstopp ingår det i allmänsjuksköterskans uppgifter att påbörja HLR för att försöka rädda patientens liv. På allmän vårdavdelning används mer avancerad behandling, så kallad S-HLR. En hjärtstoppsituation kan upplevas skrämmande för sjuksköterskan eftersom hen sannolikt behöver gå från en mer lugn till en akut situation. Det kan kännas påfrestande men kunskap och erfarenhet hjälper hen att agera. Behandlingen av hjärtstopp utförs i team tillsammans med flera professioner vilket innebär att det är viktigt med ett väl fungerande teamarbete.

    Syfte: Syftet med studien var att undersöka allmänsjuksköterskors upplevelser av att vårda vid ett hjärtstopp på vårdavdelningar.

    Metod: Som metod valdes en kvalitativ intervjustudie där resultatet baserades på sju semistrukturerade intervjuer. Intervjuerna transkriberades och analyserades sedan med en kvalitativ innehållsanalys som besvarade syftet för studien.

    Resultat: Resultatet visade på att det fanns fyra kategorier som bidrog till upplevelsen av hjärtstopp; ”Kunskap om hjärtstopp” där vikten av utbildning, rutiner och erfarenhet påtalades. ”När hjärtstopp pågår” som innefattar första reaktionen, HLR-situationen och att avbryta HLR. ”Att arbeta i team” bestående av samarbete, trygghet och verktyg för teamet. Slutligen ”Bearbetning efter hjärtstopp” som handlade om debriefing, uppföljning och uppfattning om hjärtstopp. Alla dessa områden bildade tillsammans en uppfattning av hjärtstopp.

    Slutsats: Hjärtstoppsvård är en påfrestande situation som sjuksköterskan minns länge och det är därför viktigt att avdelningarna arbetar med samtliga kategorier som framkommit i resultatet för att stödja och underlätta för de sjuksköterskor som engageras vid ett hjärtstopp på en vårdavdelning.

  • 23.
    Bremer, Anders
    University of Borås, Sweden.
    Etiska aspekter vid HLR2012Inngår i: Hjärtstoppsymposium 2012, Stockholm, Sverige 24 April, 2012Konferansepaper (Annet vitenskapelig)
  • 24.
    Bremer, Anders
    Högskolan i Borås, Institutionen för Vårdvetenskap. Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Etiska frågeställningar vid drunkning2014Konferansepaper (Annet vitenskapelig)
    Abstract [sv]

    WHO uppskattar att 450 000 människor årligen avlider i världen till följd av drunkning, varav majoriteten är barn. Hjärtstopp och plötslig död som orsakas av drunkning är betydligt vanligare i låginkomstländer. Detta innebär att många liv går förlorade till följd av drunkningsolyckor, samtidigt som fattiga länder drabbas särskilt hårt. Mot bakgrund av detta framträder den etiska frågan: Hur kan fler liv räddas? Även rättviseprincipen blir viktig och bör rimligen föranleda åtgärder för att förhindra drunkning och rädda drunkningsoffer i särskilt utsatta delar av världen. Vilket ansvar har vi i Sverige för detta arbete?

    Etiker använder ofta drunkning som exempel för att tydliggöra den moraliska plikten att rädda liv. Vid ett drunkningstillbud kräver denna plikt specifika förmågor, mod och självuppoffring. Ett fullgörande av plikten kan å ena sidan riskera egna förluster och ytterst det egna livet, och å andra sidan ge belöning i form av självaktning och framför allt minskat lidande och död för andra. Plikten att göra allt för patientens bästa grundas i godhetsprincipen som innebär att främja nyttan för den drabbade, samtidigt som riskerna med fortsatta återupplivningsförsök övervägs i ett senare skede. Här framträder den etiska frågan: Hur kan liv räddas, samtidigt som överlevnad till ett ovärdigt liv minimeras?

  • 25.
    Bremer, Anders
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Etiska värderingar inom spansk och svensk ambulanssjukvård2015Konferansepaper (Annet vitenskapelig)
  • 26.
    Bremer, Anders
    University of Borås, Sweden.
    Etiska värderingar inom spansk och svensk ambulanssjukvård2015Inngår i: Forskningssymposium om prehospital akutsjukvård: Torsdag 5 mars 2015, Högskolan i Borås, 2015Konferansepaper (Annet vitenskapelig)
  • 27.
    Bremer, Anders
    et al.
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Sandboge, Samuel
    Rosengren, Ewa
    Etiska ”knäckfrågor” inom HLR2016Konferansepaper (Annet (populærvitenskap, debatt, mm))
  • 28.
    Bremer, Anders
    et al.
    University of Borås, Sweden.
    Sandboge, Samuel
    Rosengren, Ewa
    Etiska ”knäckfrågor” inom HLR2016Inngår i: HLR2016 : Ett hjärtsäkert Sverige: Göteborg 11-12 oktober, 2016Konferansepaper (Annet vitenskapelig)
  • 29.
    Bremer, Anders
    et al.
    University of Borås, Sweden.
    Sandman, Lars
    University of Borås, Sweden.
    Etiska aspekter på HLR2011Inngår i: HLR 2011, HLR rådet , 2011Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Hälso- och sjukvårdens övergripande mål kan uttryckas som främjande av optimal livslängd med god livskvalitet och ett gott liv. Målet kan betraktas som etiskt. Vid en patients hjärtstopp är målet med den medicinska behandlingen (hjärtlungräddning, HLR) att personen överlever med åtminstone acceptabel livskvalitet. I det akuta, prehospitala skedet är det dock svårt att bedöma utfallet avseende framtida livskvalitet förutom i vissa få och relativt välbestämda fall. Det är dessutom svårt att få vetskap om patientens eventuella önskemål om sin vård. Som regel påbörjas därför HLR. Etiska riktlinjer kan ge viss vägledning i beslut om att avbryta HLR när det finns skäl att tro att målet inte kan uppnås. Ramarna för sådana riktlinjer bygger på respekt för patientens autonomi och integritet, rättvisa samt rimlighet i vårdarens yrkesroll. Detta innebära exempelvis respekt för patientens eventuella önskemål avseende HLR, undvikande av att patienten exponeras samt ansvar för att resurserna används så rättvist som möjligt. Det sistnämnda kan ibland innebära att ambulanspersonal avviker från en HLR-plats efter att HLR avbrutits för något som är viktigare än vården av närstående. Vård av närstående bör dock betraktas som en rimlig uppgift i ambulanspersonalens yrkesroll där ansvaret handlar om att tillvarata närståendes kunskap och erfarenhet, visa dem omtanke och respekt samt ge stöd, vägledning och information. Närståendes delaktighet ska främjas och kommunikationen med dem ske respektfullt, lyhört och empatiskt. Närståendes initiala roll vid en patients hjärtstopp är viktig genom att de kan bidra med värdefull informa-tion om patienten och även återge patientens vilja i förekommande fall. I händelse av att patienten avlider är målet att lindra närståendes lidande. Forskning visar dock att ambulanspersonalens uppfattningar om närståendevården och närståendes närvaro under HLR varierar från att anses som viktig för närståendes sorgeprocess och återhämtning, till att inte ingå i vårdarrollen, negativt påverka HLR-beslut och innebära emotionell belastning för vårdarna. Närståendes närvaro vid HLR tycks för en del ambulanspersonal innebära svårigheter att ge närstående emotionellt stöd och ibland leda till att HLR fortsätter längre än vad som är medici-niskt motiverat, antingen som ett sätt att lindra närståendes lidande eller för att vårdarna inte förmår att skifta från patientvård till vårdande av närstående. Att utföra HLR för någon annan skull än för patienten och längre än medicinskt motiverat är emellertid etiskt tveksamt och flyttar dessutom fokus från närståendes behov. Närståendes känslor av överväldigande ansvar och ofrivillig ensamhet belyser istället vikten av att uppmärksamhet på närståendes verkliga behov, främjande av kontrollkänsla och försök till skuldavlastning. Ambulanspersonalens uppriktighet, medmänsklighet och närvaro framstår som centrala aspekter i en etiskt god vård av närstående i samband med en patients hjärtstopp och plötsliga död.

  • 30.
    Broqvist, Mari
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Asking the public: Citizens´ views on priority setting and resource allocation in democratically governed healthcare2018Doktoravhandling, med artikler (Annet vitenskapelig)
    Abstract [en]

    Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.

    The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.

    Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.

    This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.

  • 31.
    Broqvist, Mari
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Sandman, Lars
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Garpenby, Peter
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    Krevers, Barbro
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Medicinska fakulteten.
    The meaning of severity - do citizenś views correspond to a severity framework based on ethical principles for priority setting?2018Inngår i: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, Vol. 122, nr 6, s. 630-637, artikkel-id S0168-8510(18)30081-2Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The importance for governments of establishing ethical principles and criteria for priority setting in line with social values, has been emphasised. The risk of such criteria not being operationalised and instead replaced by de-contextualised priority-setting tools, has been noted. The aim of this article was to compare whether citizenś views are in line with how a criterion derived from parliamentary-decided ethical principles have been interpreted into a framework for evaluating severity levels, in resource allocation situations in Sweden. Interviews were conducted with 15 citizens and analysed by directed content analysis. The results showed that the multi-factorial aspects that participants considered as relevant for evaluating severity, were similar to those used by professionals in the Severity Framework, but added some refinements on what to consider when taking these aspects into account. Findings of similarities, such as in our study, could have the potential to strengthen the internal legitimacy among professionals, to use such a priority-setting tool, and enable politicians to communicate the justifiability of how severity is decided. The study also disclosed new aspects regarding severity, of which some are ethically disputed, implying that our results also reveal the need for ongoing ethical discussions in publicly-funded healthcare systems.

  • 32.
    Brüggemann, A. Jelmer
    et al.
    Linköpings universitet.
    Swahnberg, Katarina
    Linköpings universitet.
    Patients’ silence towards the healthcare system after ethical transgressions by staff: associations with patient characteristics in a cross-sectional study among Swedish female patients2012Inngår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, nr 6Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: To identify which patient characteristics are associated with silence towards the healthcare system after experiences of abusive or ethically wrongful transgressive behaviour by healthcare staff.

    Design: Cross-sectional questionnaire study using the Transgressions of Ethical Principles in Health Care Questionnaire.

    Setting: A women's clinic in the south of Sweden.

    Participants: Selection criteria were: consecutive female patients coming for an outpatient appointment, ≥18-year-old, with the ability to speak and understand the Swedish language, and a known address.

    Questionnaires were answered by 534 women (60%) who had visited the clinic, of which 293 were included in the present study sample.

    Primary outcome measure: How many times the respondent remained silent towards the healthcare system relative to the number of times the respondent spoke up.

    Results: Associations were found between patients’ silence towards the healthcare system and young age as well as lower self-rated knowledge of patient rights. Both variables showed independent effects on patients’ silence in a multivariate model. No associations were found with social status, country of birth, health or other abuse.

    Conclusions: The results offer opportunities for designing interventions to stimulate patients to speak up and open up the clinical climate, for which the responsibility lies in the hands of staff; but more research is needed.

  • 33.
    Brüggemann, Jelmer
    et al.
    Linköpings universitet, Institutionen för tema, Tema teknik och social förändring. Linköpings universitet, Filosofiska fakulteten. Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för barns och kvinnors hälsa. Linköpings universitet, Medicinska fakulteten.
    Forsberg, Camilla
    Linköpings universitet, Institutionen för beteendevetenskap och lärande, Pedagogik och didaktik. Linköpings universitet, Utbildningsvetenskap. Linköpings universitet, Institutionen för klinisk och experimentell medicin, Avdelningen för barns och kvinnors hälsa. Linköpings universitet, Medicinska fakulteten.
    Thornberg, Robert
    Linköpings universitet, Institutionen för beteendevetenskap och lärande, Pedagogik och didaktik. Linköpings universitet, Utbildningsvetenskap.
    Re-negotiating agency: patients using comics to reflect upon acting in situations of abuse in health care2019Inngår i: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 19, nr 1, artikkel-id 58Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    There is a growing body of international research that displays the prevalence and character of abuse in health care. Even though most of these studies are conducted from a patient perspective little is known about how patients conceptualize their agency in relation to such situations. This study aimed to explore how patients reason about their potential to act in abusive situations.

    Methods

    Qualitative interviews were conducted with thirteen patients in Sweden. Central in the interviews were three comics, inspired by Boal’s Forum Theatre and part of an earlier online intervention study in which the informants had participated. Each comic showed a situation in which a patient feels abused, and on the opposite side were suggestions for how the patient could act in response. Informants were asked to reflect about situations of abuse and in specific upon the comics. We used the methodology of constructivist grounded theory throughout the study, including the analysis.

    Results

    It appeared that the informants constantly re-negotiated their and other patients’ agency in relation to the specifics of the event, patients’ and staff’s responsibilities, and the patients’ needs and values. This process questions views of agency as fixed and self-evident, and can be understood as part of changing discourses about patients’ social role and possibilities to organize their care. Using a feminist theory of power we expected the informants to elicit instances of resistance to domination, which is central to the comics. While doing that, the informants also hinted at parallel stories of empowerment and less visible forms of agency in spite of domination.

    Conclusion

    The current analysis showed different ways in which the informants constantly re-negotiated their agency in potentially abusive situations. Not only did the informants engage in reflections about immediate responses to these untoward situations, they also engaged in thoughts about strategies that could protect them and counteract abuse in health care over the long-term. This opens up for future research into ways patients organize their care and identify threats and barriers to the care they need, which could be valuable knowledge for care quality improvement.

  • 34.
    Brüggemann, Jelmer
    et al.
    Linköpings universitet.
    Wijma, Barbro
    Linköpings universitet.
    Swahnberg, Katarina
    Linköpings universitet.
    Patients’ silence following healthcare staff’s ethical transgressions2012Inngår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 19, nr 6, s. 750-763Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of this study was to examine to what extent patients remained silent to the health care system after they experienced abusive or wrongful incidents in health care. Female patients visiting a women’s clinic in Sweden (n = 530) answered the Transgressions of Ethical Principles in Health Care Questionnaire (TEP), which was constructed to measure patients’ abusive experiences in the form of staff’s transgressions of ethical principles in health care. Of all the patients, 63.6% had, at some point, experienced staff’s transgressions of ethical principles, and many perceived these events as abusive and wrongful. Of these patients, 70.3% had remained silent to the health care system about at least one transgression. This silence is a loss of essential feedback for the health care system and should not automatically be interpreted as though patients are satisfied.

  • 35.
    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 universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. EURAC, Ctr Biomed, Bolzano, Italy..
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research2017Inngår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, artikkel-id 4Artikkel i tidsskrift (Fagfellevurdert)
    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.

  • 36.
    Bäckryd, Emmanuel
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för samhällsmedicin. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Sinnescentrum, Smärt och rehabiliteringscentrum.
    Nurturing the Virtues: Upholding Professionalism in the Midst of Busy Medical Practice2019Inngår i: Journal of Continuing Education in the Health Professions, ISSN 0894-1912, E-ISSN 1554-558X, Vol. 39, nr 1, s. 69-72Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Tom L. Beauchamp and James F. Childress (Bamp;C) book Principles of Biomedical Ethics is well known for its fourprinciple approach to biomedical ethics. However, the authors also emphasize the importance of the virtues of health care personnel. After a short overview of virtue ethics, the five "focal virtues" described by Bamp;C are discussed and applied to a chronic pain example. The question of how virtues are learned in the health care setting is addressed, and it is argued that virtues such as the ones defended by Bamp;C are acquired when health care personnel are socialized in an environment dedicated to the continuous upholding of practices that aim at the telos of medicine. Viewed from this perspective, professional isolation can be considered to be dangerous; the upholding of medical professionalism throughout a whole career largely presupposing the existence of a community where virtues relevant to the practice of medicine are embodied and kept alive. The concept of professional socialization is important in that respect. Finally, some potential general implications of this view for continuing professional development are proposed.

  • 37.
    Bäckryd, Emmanuel
    Linköpings universitet, Medicinska fakulteten. Region Östergötland, Sinnescentrum, Smärt och rehabiliteringscentrum. Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för samhällsmedicin.
    "Professional Helper" or "Helping Professional?" The Patient-Physician Relationship in the Chronic Pain Setting, With Special Reference to the Current Opioid Debate2016Inngår i: Journal of Continuing Education in the Health Professions, ISSN 0894-1912, E-ISSN 1554-558X, Vol. 36, nr 2, s. 133-137Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    There seems to be a strong cultural expectation among patients for effective pain relief. As a result, physicians often find themselves trying to bridge the gap between the chronic pain patients expectations and harsh biomedical reality. The typology of Emanuel and Emanuel of four models for the patient-physician relationship is used in this article as a conceptual tool to examine the possible roles of physicians in the context of chronic noncancer pain. Their typology is reconceptualized as a "pathway" along which the physician is able to walk more or less far, starting from the "information" end of the path. The other end of the pathway is "caring deliberation." I then propose that, in pain medicine today, consumerism is a powerful incentive for physicians to stay at the information end of the spectrum. Against this background, I discuss the current opioid epidemic in the United States and the need for what has been called a new medical professionalism. I conclude by challenging educators involved in pain medicine continuing professional development to not only design adequate biomedical-educational programs, but also consider issues like professionalism, personal development, critical self-reflection, and the ethics of engaging in caring deliberation with chronic pain patients.

  • 38. Båtelson, Karin
    et al.
    Engström, Ingemar
    Örebro universitet, Institutionen för hälsovetenskap och medicin.
    Petersson, Göran
    Replik till Hans Wingstrand et al angående vårdens IT-system [Reply to Hans Wingstrand et al regarding healthcare IT systems]: "Viktigt med avvägning mellan patientsäkerhet och integritet" ["Important to balance patient safety and privacy"]2015Inngår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, artikkel-id DD9CArtikkel i tidsskrift (Fagfellevurdert)
  • 39. Cambon-Thomsen, Anne
    et al.
    Bovenberg, Jasper
    Lavitrano, Marialuisa
    Hansson, Mats G.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Mayrhofer, Michaela
    Litton, Jan-Eric
    Ethical, Legal and Societal Implications of Biobanking at European Level: A Common Service of the European Biobank and Biomolecular Research Infrastructure2015Inngår i: Tissue Antigens, ISSN 0001-2815, E-ISSN 1399-0039, Vol. 85, nr 5, s. 372-372Artikkel i tidsskrift (Fagfellevurdert)
  • 40.
    Campano, Erik
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
    Artificially Intelligent Black Boxes in Emergency Medicine: An Ethical Analysis2019Independent thesis Advanced level (degree of Master (Two Years)), 20 poäng / 30 hpOppgave
    Abstract [sv]

    Det blir allt vanligare att föreslå att icke-transparant artificiell intelligens, s.k. black boxes, används inom akutmedicinen. I denna uppsats används etisk analys för att härleda sju riktlinjer för utveckling och användning av black boxes i akutmedicin. Analysen är grundad på sju variationer av ett tankeexperiment som involverar en läkare, en black box och en patient med bröstsmärta på en akutavdelning. Grundläggande begrepp, inklusive artificiell intelligens, black boxes, metoder för transparens, akutmedicin och etisk analys behandlas detaljerat. Tre viktiga områden av etisk vikt identifieras: samtycke; kultur, agentskap och privatliv; och skyldigheter. Dessa områden ger upphov till de sju variationerna. För varje variation urskiljs en viktig etisk fråga som identifieras och analyseras. En riktlinje formuleras och dess etiska rimlighet testas utifrån konsekventialistiska och deontologiska metoder. Tillämpningen av riktlinjerna på medicin i allmänhet, och angelägenheten av fortsatt etiska analys av black boxes och artificiell intelligens inom akutmedicin klargörs.

  • 41.
    Carrieri, Daniele
    et al.
    Univ Exeter, Egenis, England.
    Howard, Heidi Carmen
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Benjamin, Caroline
    Univ Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England.
    Clarke, Angus J.
    Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.
    Dheensa, Sandi
    Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England.
    Doheny, Shane
    Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.
    Hawkins, Naomi
    Univ Exeter, Law Sch, Exeter, Devon, England.
    Halbersma-Konings, Tanya F.
    Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands.
    Jackson, Leigh
    Univ Exeter, Sch Med, Egenis, England.
    Kayserili, Hulya
    Koc Univ KUSoM, Sch Med, Med Genet Dept, Istanbul, Turkey.
    Kelly, Susan E.
    Univ Exeter, Egenis, England.
    Lucassen, Anneke M.
    Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England;Univ Hosp Southampton NHS Fdn Trust, Wessex Clin Genet Serv, Southampton, Hants, England.
    Mendes, Alvaro
    Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Porto, Portugal;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, CGPP Ctr Predict & Prevent Genet, Porto, Portugal.
    Rial-Sebbag, Emmanuelle
    Univ Paul Sabatier Toulouse III, INSERM, UMR 1027, Toulouse, France.
    Stefansdottir, Vigdis
    Natl Univ Hosp Iceland, Dept Genet & Mol Med, Landspitali, Reykjavik, Iceland.
    Turnpenny, Peter D.
    Royal Devon & Exeter NHS Fdn Trust, Clin Genet, Exeter, Devon, England.
    van El, Carla G.
    Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands.
    van Langen, Irene M.
    Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands.
    Cornel, Martina C.
    Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands.
    Forzano, Francesca
    Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, ON, Canada.
    Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics2019Inngår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, nr 2, s. 169-182Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.

  • 42. Corradetti, Claudio
    et al.
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Patientcentricity2012Inngår i: Studies in Ethics, Law, and Technology, ISSN 1941-6008, E-ISSN 1941-6008, Vol. 6, nr 1, s. 1-2Artikkel i tidsskrift (Fagfellevurdert)
  • 43.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Ai cui sunt embrionii?2015Inngår i: Think Outside the BoxArtikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 44.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Casatoria intre persoane de acelasi sex, perpetuarea speciei umane si cresterea de copii2013Inngår i: Think Outside the BoxArtikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 45.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Göteborgs universitet, Göteborg.
    Ce se intampla cu ovulele?: Cand parintii care si-au pierdut fiica ar putea deveni bunici2015Inngår i: Think Outside the BoxArtikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 46.
    Cutas, Daniela
    University of Gothenburg.
    Children with Gender Identity Disorder: a Clinical, Ethical, and Legal Analysis. Author: Simona Giordano, 2013, Published by Routledge2015Inngår i: Analize – Journal of Gender and Feminist Studies, Vol. 4, nr 18, s. 117-125Artikkel, omtale (Annet vitenskapelig)
  • 47.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Cum a devenit un barbat tatal fratelui sau: aspecte etice si legale2015Inngår i: Think Outside the BoxArtikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 48.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Framtidens familjer: definitioner, etik och politik2015Inngår i: Filosofisk Tidskrift, ISSN 0348-7482, Vol. 36, nr 3, s. 12-19Artikkel i tidsskrift (Annet vitenskapelig)
  • 49.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Primul copil nascut in urma unui transplant de uter. Cateva implicatii etice2014Inngår i: Think Outside the BoxArtikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 50.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Undervisning i forskningsetik kräver praktisk relevans och moralfilosofisk teori2016Annet (Annet (populærvitenskap, debatt, mm))
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