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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 Kenya2013Ingår i: Ethnicity and Health, ISSN 1355-7858, E-ISSN 1465-3419, Vol. 18, nr 5, s. 454-468Artikel i tidskrift (Refereegranskat)
    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 practice2011Ingår i: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 14, nr 3, s. 323-331Artikel i tidskrift (Refereegranskat)
    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 Report2016Ingår i: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 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 Report2016Ingår i: Trafficking in Human Beings for the Purpose of Organ Removal: Results and Recommendations / [ed] Frederike Ambagtsheer & Willem Weimar, Lengerich: Pabst Science Publishers, 2016Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 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 Aged2017Ingår i: Irish Journal of Medical Science, ISSN 0021-1265, E-ISSN 1863-4362, Vol. 186, nr Suppl.4, s. S161-S161Artikel i tidskrift (Refereegranskat)
    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 forskning2016Övrigt (Övrig (populärvetenskap, debatt, mm))
  • 7.
    Axelsson, Per
    Umeå universitet, Humanistiska fakulteten, Centrum för samisk forskning (CeSam).
    Preconceived opinions: Iñupiat and Swedish Sami populations in polio research2012Ingår 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. 169-177Kapitel i bok, del av antologi (Övrigt vetenskapligt)
  • 8. 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 researchers2016Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 17, artikel-id 37Artikel i tidskrift (Refereegranskat)
    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.

  • 9. 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 recommendations2016Ingår i: Neurology, ISSN 0028-3878, E-ISSN 1526-632X, Vol. 86, nr 24, s. 2295-2302Artikel, forskningsöversikt (Refereegranskat)
    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.

  • 10.
    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 Sets2016Ingår i: BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 2016, s. 89-105Konferensbidrag (Refereegranskat)
    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.

  • 11. 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?2015Ingår i: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 13, nr 2, s. 70-71Artikel i tidskrift (Refereegranskat)
  • 12. 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.2010Ingår i: Journal of community genetics, ISSN 1868-310X, Vol. 1, nr 3, s. 101-106Artikel i tidskrift (Refereegranskat)
    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.

  • 13. 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.2011Ingår i: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, nr 5, s. 972-7Artikel i tidskrift (Refereegranskat)
    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.

  • 14. 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.2010Ingår i: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, nr 1, s. 51-9Artikel i tidskrift (Refereegranskat)
    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.

  • 15. 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.2014Ingår i: Fertility and Sterility, ISSN 0015-0282, E-ISSN 1556-5653, Vol. 101, nr 3, s. 630-2Artikel i tidskrift (Refereegranskat)
  • 16. 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.2013Ingår i: Nature, ISSN 0028-0836, E-ISSN 1476-4687, Vol. 496, nr 7444, s. 169-Artikel i tidskrift (Refereegranskat)
  • 17. 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.2012Ingår i: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 20, nr 7, s. 715-21Artikel i tidskrift (Refereegranskat)
    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.

  • 18.
    Bradby, Hannah
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Sociologiska institutionen.
    (Imaginary) healthcare heroes – Ms Conscientious (#2 in an occasional series)2015Övrigt (Övrig (populärvetenskap, debatt, mm))
  • 19.
    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.2017Självständigt arbete på grundnivå (kandidatexamen), 10 poäng / 15 hpStudentuppsats (Examensarbete)
    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.

  • 20.
    Bremer, Anders
    University of Borås.
    Etiska aspekter vid HLR2012Ingår i: Hjärtstoppsymposium 2012, Stockholm, Sverige 24 April, 2012Konferensbidrag (Övrigt vetenskapligt)
  • 21.
    Bremer, Anders
    Högskolan i Borås, Institutionen för Vårdvetenskap. Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Etiska frågeställningar vid drunkning2014Konferensbidrag (Övrigt vetenskapligt)
    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?

  • 22.
    Bremer, Anders
    University of Borås.
    Etiska värderingar inom spansk och svensk ambulanssjukvård2015Ingår i: Forskningssymposium om prehospital akutsjukvård: Torsdag 5 mars 2015, Högskolan i Borås, 2015Konferensbidrag (Övrigt vetenskapligt)
  • 23.
    Bremer, Anders
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Etiska värderingar inom spansk och svensk ambulanssjukvård2015Konferensbidrag (Övrigt vetenskapligt)
  • 24.
    Bremer, Anders
    et al.
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Sandboge, Samuel
    Rosengren, Ewa
    Etiska ”knäckfrågor” inom HLR2016Konferensbidrag (Övrig (populärvetenskap, debatt, mm))
  • 25.
    Bremer, Anders
    et al.
    University of Borås.
    Sandboge, Samuel
    Rosengren, Ewa
    Etiska ”knäckfrågor” inom HLR2016Ingår i: HLR2016 : Ett hjärtsäkert Sverige: Göteborg 11-12 oktober, 2016Konferensbidrag (Övrigt vetenskapligt)
  • 26.
    Bremer, Anders
    et al.
    University of Borås.
    Sandman, Lars
    University of Borås.
    Etiska aspekter på HLR2011Ingår i: HLR 2011, HLR rådet , 2011Konferensbidrag (Refereegranskat)
    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.

  • 27.
    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 healthcare2018Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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.

  • 28.
    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?2018Ingår i: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, artikel-id S0168-8510(18)30081-2Artikel i tidskrift (Refereegranskat)
    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.

  • 29.
    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 patients2012Ingår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, nr 6Artikel i tidskrift (Refereegranskat)
    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.

  • 30.
    Brüggemann, Jelmer
    et al.
    Linköpings universitet.
    Wijma, Barbro
    Linköpings universitet.
    Swahnberg, Katarina
    Linköpings universitet.
    Patients’ silence following healthcare staff’s ethical transgressions2012Ingår i: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 19, nr 6, s. 750-763Artikel i tidskrift (Refereegranskat)
    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.

  • 31.
    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 research2017Ingår i: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, artikel-id 4Artikel i tidskrift (Refereegranskat)
    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.

  • 32.
    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 Debate2016Ingår i: Journal of Continuing Education in the Health Professions, ISSN 0894-1912, E-ISSN 1554-558X, Vol. 36, nr 2, s. 133-137Artikel i tidskrift (Refereegranskat)
    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.

  • 33. 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"]2015Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112, artikel-id DD9CArtikel i tidskrift (Refereegranskat)
  • 34. 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 Infrastructure2015Ingår i: Tissue Antigens, ISSN 0001-2815, E-ISSN 1399-0039, Vol. 85, nr 5, s. 372-372Artikel i tidskrift (Refereegranskat)
  • 35. Corradetti, Claudio
    et al.
    Mascalzoni, Deborah
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik.
    Patientcentricity2012Ingår i: Studies in Ethics, Law, and Technology, ISSN 1941-6008, E-ISSN 1941-6008, Vol. 6, nr 1, s. 1-2Artikel i tidskrift (Refereegranskat)
  • 36.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Ai cui sunt embrionii?2015Ingår i: Think Outside the BoxArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 37.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Casatoria intre persoane de acelasi sex, perpetuarea speciei umane si cresterea de copii2013Ingår i: Think Outside the BoxArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 38.
    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 bunici2015Ingår i: Think Outside the BoxArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 39.
    Cutas, Daniela
    University of Gothenburg.
    Children with Gender Identity Disorder: a Clinical, Ethical, and Legal Analysis. Author: Simona Giordano, 2013, Published by Routledge2015Ingår i: Analize – Journal of Gender and Feminist Studies, Vol. 4, nr 18, s. 117-125Artikel, recension (Övrigt vetenskapligt)
  • 40.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Cum a devenit un barbat tatal fratelui sau: aspecte etice si legale2015Ingår i: Think Outside the BoxArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 41.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Framtidens familjer: definitioner, etik och politik2015Ingår i: Filosofisk Tidskrift, ISSN 0348-7482, Vol. 36, nr 3, s. 12-19Artikel i tidskrift (Övrigt vetenskapligt)
  • 42.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Primul copil nascut in urma unui transplant de uter. Cateva implicatii etice2014Ingår i: Think Outside the BoxArtikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
  • 43.
    Cutas, Daniela
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Undervisning i forskningsetik kräver praktisk relevans och moralfilosofisk teori2016Övrigt (Övrig (populärvetenskap, debatt, mm))
  • 44.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands .
    Dondorp, Wybo
    Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands .
    Swierstra, Tsjalling
    Department of Philosophy, Maastricht University, Maastricht, The Netherlands .
    Repping, Sjoerd
    Centre for Reproductive Medicine, University of Amsterdam, Amsterdam, The Netherlands.
    de Wert, Guido
    Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands.
    Artificial gametes: perspectives of geneticists, ethicists and representatives of potential users2014Ingår i: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 7, nr 3, s. 339-345Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Several threads of research towards developing artificial gametes are ongoing in a number of research labs worldwide. The development of a technology that could generate gametes in vitro has significant potential for human reproduction, and raises a lot of interest, as evidenced by the frequent and extensive media coverage of research in this area. We have asked researchers involved in work with artificial gametes, ethicists, and representatives of potential user groups, how they envisioned the use of artificial gametes in human reproduction. In the course of three focus groups, the participants commented on the various aspects involved. The two recurring themes were the strength of the claim of becoming a parent genetically, and the importance of responsible communication of science. The participants concurred that (a) the desire or need to have genetic offspring of one’s own does not warrant the investment of research resources into these technologies, and that (b) given the minefield in terms of moral controversy and sensitivity that characterises the issues involved, how information is communicated and handled is of great importance.

  • 45.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden.
    Hens, Kristien
    Department of Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.
    Preserving children's fertility: two tales about children's right to an open future and the margins of parental obligations2015Ingår i: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 18, nr 2, s. 253-260Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic.

  • 46.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Munthe, Christian
    University of Gothenburg, Department of Philosophy, Linguistics and Theory of Science.
    Legal imperialism in the regulation of stem cell research and therapy: the problem of extraterritorial jurisdiction2010Ingår i: Contested Cells: Global Perspectives on the Stem Cell Debates / [ed] B. Capps and A. Campbell, Singapore and London: World Scientific and Imperial College Press , 2010Kapitel i bok, del av antologi (Refereegranskat)
  • 47.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Department of Philosophy, Linguistics and Theory of Science, Göteborgs Universitet, Göteborg, Sweden.
    Shaw, David
    Basel, Switzerland; Maastricht University, Maastricht, The Netherlands.
    Writers blocked: on the wrongs of research co-authorship and some possible strategies for improvement2015Ingår i: Science and Engineering Ethics, ISSN 1353-3452, E-ISSN 1471-5546, Vol. 21, nr 5, s. 1315-1329Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The various problems associated with co-authorship of research articles have attracted much attention in recent years. We believe that this (hopefully) growing awareness is a very welcome development. However, we will argue that the particular and increasing importance of authorship and the harmful implications of current practices of research authorship for junior researchers have not been emphasised enough. We will use the case of our own research area (bioethics) to illustrate some of the pitfalls of current publishing practices – in particular, the impact on the evaluation of one’s work in the area of employment or funding. Even where there are explicit guidelines, they are often disregarded. This disregard, which is often exemplified through the inflation of co-authorship in some research areas, may seem benign to some of us; but it is not. Attribution of co-authorship for reasons other than merit in relation to the publication misrepresents the work towards that publication, and generates unfair competition. We make a case for increasing awareness, for transparency and for more explicit guidelines and regulation of research co-authorship within and across research areas. We examine some of the most sensitive areas of concern and their implications for researchers, particularly junior ones, and we suggest several strategies for future action.

  • 48.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden .
    Smajdor, Anna
    Norwich School of Medicine, University of East Anglia, Norwich, UK .
    "I am your mother and your father!": in vitro derived gametes and the ethics of solo reproduction2017Ingår i: Health Care Analysis, ISSN 1065-3058, E-ISSN 1573-3394, Vol. 25, nr 4, s. 354-369Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In this paper, we will discuss the prospect of human reproduction achieved with gametes originating from only one person. According to statements by a minority of scientists working on the generation of gametes in vitro, it may become possible to create eggs from men’s non-reproductive cells and sperm from women’s. This would enable, at least in principle, the creation of an embryo from cells obtained from only one individual: ‘solo reproduction’. We will consider what might motivate people to reproduce in this way, and the implications that solo reproduction might have for ethics and policy. We suggest that such an innovation is unlikely to revolutionise reproduction and parenting. Indeed, in some respects it is less revolutionary than in vitro fertilisation as a whole. Furthermore, we show that solo reproduction with in vitro created gametes is not necessarily any more ethically problematic than gamete donation - and probably less so. Where appropriate, we draw parallels with the debate surrounding reproductive cloning. We note that solo reproduction may serve to perpetuate reductive geneticised accounts of reproduction, and that this may indeed be ethically questionable. However, in this it is not unique among other technologies of assisted reproduction, many of which focus on genetic transmission. It is for this reason that a ban on solo reproduction might be inconsistent with continuing to permit other kinds of reproduction that also bear the potential to strengthen attachment to a geneticised account of reproduction. Our claim is that there are at least as good reasons to pursue research towards enabling solo reproduction, and eventually to introduce solo reproduction as an option for fertility treatment, as there are to do so for other infertility related purposes.

  • 49.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier.
    Smajdor, Anna
    Postmenopausal Motherhood Reloaded: Advanced Age and In Vitro Derived Gametes2015Ingår i: Hypatia, ISSN 0887-5367, E-ISSN 1527-2001, Vol. 30, nr 2, s. 386-402Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In this paper we look at the implications of a prospective emerging technology for the case in favor of, or against, postmenopausal motherhood. Technologies such as in vitro derived gametes (sperm and eggs derived from non-reproductive cells) have the potential to influence the ways in which reproductive medicine is practiced, and will bring new dimensions to debates in this area. We explain what in vitro derived gametes are and how their development may impact on the case of postmenopausal motherhood. We briefly review some of the concerns that postmenopausal motherhood has raised – and the implications that the successful development, and use in reproduction, of artificial gametes might have for such concerns. The concerns addressed include arguments from nature, risks and efficacy, reduced energy of the mother, and maternal life expectancy. We also consider whether the use of in vitro derived gametes to facilitate postmenopausal motherhood would contribute to reinforcing a narrow geneticized account of reproduction and a pro-reproductive culture that encourages women to produce genetically related offspring at all costs. 

  • 50.
    Cutas, Daniela
    et al.
    Umeå universitet, Humanistiska fakulteten, Institutionen för idé- och samhällsstudier. Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden.
    Smajdor, Anna
    Hens, Kristien
    Procreative procrastination: the ethics of postponed parenthood2017Ingår i: Preventing age related fertility loss / [ed] Dominic Stoop, Springer Publishing Company, 2017, s. 141-156Kapitel i bok, del av antologi (Refereegranskat)
    Abstract [en]

    In recent years, there has been growing concern over the perceived tendency of women to postpone childbearing. In this chapter, we show that some of the responses to the phenomenon of postponed reproduction are deeply problematic. The question of whether it is accurate to construe later motherhood as postponement at all is far from clear. Moreover, public health messages tend to recommend earlier motherhood as a way of avoiding risks, but this is a crude oversimplification: reproduction involves risks whenever it is undertaken. The focus on risk calls into question some of the strategies intended to remedy postponement of parenthood. There is also the question of where men feature in these decisions: they are all but absent in the public health material and media debates. We consider whether technology could offer a solution to postponement of parenthood, whether there are any benefits to postponement, and finally, whether postponed parenthood could itself be seen as part of a broader trend towards neoteny (the delaying of maturity) in human evolution.

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