uu.seUppsala University Publications
Change search
Refine search result
1234567 1 - 50 of 466
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Rows per page
  • 5
  • 10
  • 20
  • 50
  • 100
  • 250
Sort
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
Select
The maximal number of hits you can export is 250. When you want to export more records please use the 'Create feeds' function.
  • 1.
    Aarum Hansen, Heidi
    et al.
    Østfold University College.
    Björktomta, Siv-Britt
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Sociology.
    Svalastog, Anna Lydia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Digital society generates new challenges on Child Welfare Services2017In: Croatian Medical Journal, ISSN 0353-9504, E-ISSN 1332-8166, ISSN ISSN 0353-9504, Vol. 58, no feb, p. 80-83, article id 2017.58.80Article in journal (Refereed)
    Abstract [en]

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

  • 2. Al-Janabi, Hareth
    et al.
    Coast, Joanna
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.2008In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 67, no 1, p. 111-21Article in journal (Refereed)
    Abstract [en]

    Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

  • 3. Al-Janabi, Hareth
    et al.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Coast, Joanna
    Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.2012In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 21, no 1, p. 167-76Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation. This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A).

    METHODS: In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews.

    RESULTS: Five over-arching attributes of capability wellbeing were identified for the measure: "stability", "attachment", "achievement", "autonomy" and "enjoyment". One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system.

    CONCLUSIONS: The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions.

  • 4.
    Ancillotti, Mirko
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    John Harris. Persona, potenzialità e pre-persona2013In: Sintesi Dialettica, ISSN 2037-2957, Vol. 6, no 1Article in journal (Refereed)
    Abstract [it]

    Secondo la nozione sviluppata da John Harris è da considerare persona l’individuo che dimostri la capacità di concepire se stesso in differenti tempi e luoghi e che sia capace di desiderare di fare esperienza di una vita a cui assegna un valore. Tale concezione viene analizzata ricostruendone la genesi, chiarendo quali criteri sottendono le scelte effettuate. L’elaborazione teorica di Harris viene posta a confronto con altre due formulazioni contemporanee, sviluppate rispettivamente da Peter Singer e Vittorio Possenti. Nell’ultima parte sono stati approfonditi criticamente due concetti che emergono dalla descrizione di Harris della persona e che sono ad essa collegati, ossia i concetti di potenzialità e pre-persona.

  • 5.
    Ancillotti, Mirko
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Synthetic Biology in the Press: Media Portrayal in Sweden and Italy2016In: Ambivalences of Creating Life. : Societal and Philosophical Dimensions of Synthetic Biology / [ed] K Hagen, M Engelhard & G Toepfer, Dordrecht: Springer, 2016, p. 141-156Chapter in book (Refereed)
    Abstract [en]

    Synthetic biology is a rapidly evolving field which potentially can change how we live in and understand the world. Given its potential impact it is important to inform and involve the public so that it gains a proper understanding of synthetic biology and is in a position to assess its future applications and implications. This study investigates through qualitative content analysis the synthetic biology press coverage in Sweden and Italy between 2009 and 2013. The three major newspapers of each country were considered a good example of what was offered to the public in a period which witnessed important scientific advancements of the field and consequent media resonance. The framing of the articles was analyzed in the light of the idea that mass media not only inform the public but also contribute to the shaping of ideas. Language was analysed and found to be generally adequate. The topics were presented in an overall positive and optimistic tone, which was reflected also in the benefits and risks envisioned. The two countries can be considered rather different in many social and cultural respects, yet besides a few differences (mainly quantitative), striking similarities were found, probably related to a marked dependence on the common sources of the articles and the lack of critical scrutiny on the behalf of the media.

  • 6.
    Ancillotti, Mirko
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Holmberg, Niklas
    Abo Akad Univ, Theol Eth & Philosophy Relig, Turku, Finland..
    Lindfelt, Mikael
    Abo Akad Univ, Theol Eth & Philosophy Relig, Turku, Finland..
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Uncritical and unbalanced coverage of synthetic biology in the Nordic press2017In: Public Understanding of Science, ISSN 0963-6625, E-ISSN 1361-6609, Vol. 26, no 2, p. 235-250Article in journal (Refereed)
    Abstract [en]

    Synthetic biology will probably have a high impact on a variety of fields, such as healthcare, environment, biofuels, agriculture, and so on. A driving theme in European research policy is the importance of maintaining public legitimacy and support. Media can influence public attitudes and are therefore an important object of study. Through qualitative content analysis, this study investigates the press coverage of synthetic biology in the major Nordic countries between 2009 and 2014. The press coverage was found to be event-driven and there were striking similarities between countries when it comes to framing, language use, and treated themes. Reporters showed a marked dependence on their sources, mainly scientists and stakeholders, who thus drives the media agenda. The media portrayal was very positive, with an optimistic look at future benefits and very little discussion of possible risks.

  • 7.
    Ancillotti, Mirko
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rerimassie, Virgil
    Seitz, Stefanie B.
    Steurer, Walburg
    An Update of Public Perceptions of Synthetic Biology: Still Undecided?2016In: NanoEthics, ISSN 1871-4757, E-ISSN 1871-4765, Vol. 10, no 3, p. 309-325Article in journal (Refereed)
    Abstract [en]

    The discourse on the fundamental issues raised by synthetic biology, such as biosafety and biosecurity, intellectual property, environmental consequences and ethical and societal implications, is still open and controversial. This, coupled with the potential and risks the field holds, makes it one of the hottest topics in technology assessment today. How a new (bio)technology is perceived by the public influences the manner in which its products and applications will be received. Therefore, it is important to learn how people perceive synthetic biology. This work gathers, integrates and discusses the results of three studies of public perceptions of synthetic biology: (1) an analysis of existing research on how media portray synthetic biology across 13 European countries and in the USA, (2) the Meeting of Young Minds, a public debate between prospective politicians and synthetic biologists in the Netherlands and (3) the experiences of citizen panels and focus groups in Austria, the UK and the USA. The results show that the media are generally positive in their reports on synthetic biology, rather unbalanced in their view of potential benefits (emphasized) and risks (downplayed), and also heavily influenced by the sources of the stories, namely scientists and stakeholders. Among the prospective Dutch politicians, there were positive expectations as well as very negative ones. Some of these positions are also shared by participants in public dialogue experiments, such as not only the demand for information, transparency and regulation but also a sense of resignation and ineluctability of scientific and technological progress.

  • 8.
    Angelov, Nikolay
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Units outside the University, Office of Labour Market Policy Evaluation.
    Eliason, Marcus
    Uppsala University, Units outside the University, Office of Labour Market Policy Evaluation.
    The Differential Earnings and Income Effects of Involuntary Job Loss on Workers with Disabilities: Evidence from Sweden2016In: Labour, ISSN 1121-7081, E-ISSN 1467-9914, Vol. 30, no 2, p. 213-233Article in journal (Refereed)
    Abstract [en]

    People with disabilities are consistently found to face considerable difficulties in the labour market. In this study we investigated whether their earnings and income trajectories are more adversely affected in case of involuntary job loss. Earnings of those with and without disabilities began to diverge already several years prior to job loss because of larger incidence of sickness. Following job loss much more job losers with disabilities became disability retirees resulting in a considerable and seemingly permanent earnings differential. However, larger uptake of public social insurances among job losers with disabilities resulted in a much smaller income differential.

  • 9.
    Angelov, Nikolay
    et al.
    Uppsala University, Units outside the University, Office of Labour Market Policy Evaluation. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Johansson, Per
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics. Uppsala University, Units outside the University, Office of Labour Market Policy Evaluation.
    Lindahl, Erica
    Uppsala University, Units outside the University, Office of Labour Market Policy Evaluation.
    Parenthood and the Gender Gap in Pay2016In: Journal of Labor Economics, ISSN 0734-306X, Vol. 34, no 3, p. 545-579Article in journal (Refereed)
    Abstract [en]

    We compare the income and wage trajectories of women to those of their male partners before and after parenthood. Focusing on the within-couple gap allows us to control for both observed and unobserved attributes of the spouse and to estimate both short-and long-term effects of entering parenthood. We find that 15 years after the first child has been born, the male-female gender gaps in income and wages have increased by 32 and 10 percentage points, respectively. In line with a collective labor supply model, the magnitude of these effects depends on counterfactual relative incomes or wages within the family.

  • 10. Appelros, Erica
    et al.
    Eriksson, StefanUppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.Stenqvist, Catharina
    Makt och religion i könsskilda världar: religionsfilosofiska perspektiv2003Collection (editor) (Other academic)
  • 11. Araya, Ricardo
    et al.
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rojas, Graciela
    Fritsch, Rosemarie
    Simon, Greg
    Cost-effectiveness of a primary care treatment program for depression in low-income women in Santiago, Chile.2006In: American Journal of Psychiatry, ISSN 0002-953X, E-ISSN 1535-7228, Vol. 163, no 8, p. 1379-87Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The authors compared the incremental cost-effectiveness of a stepped-care, multicomponent program with usual care for the treatment of depressed women in primary care in Santiago, Chile.

    METHOD: A cost-effectiveness study was conducted of a previous randomized controlled trial involving 240 eligible women with DSM-IV major depression who were selected from a consecutive sample of adult women attending primary care clinics. The patients were randomly allocated to usual care or a multicomponent stepped-care program led by a nonmedical health care worker. Depression-free days and health care costs derived from local sources were assessed after 3 and 6 months. A health service perspective was used in the economic analysis.

    RESULTS: Complete data were determined for 80% of the randomly assigned patients. After we adjusted for initial severity, women receiving the stepped-care program had a mean of 50 additional depression-free days over 6 months relative to patients allocated to usual care. The stepped-care program was marginally more expensive than usual care (an extra 216 Chilean pesos per depression-free day). There was a 90% probability that the incremental cost of obtaining an extra depression-free day with the intervention would not exceed 300 pesos (1.04 US dollars).

    CONCLUSIONS: The stepped-care program was significantly more effective and marginally more expensive than usual care for the treatment of depressed women in primary care. Small investments to improve depression appear to yield larger gains in poorer environments. Simple and inexpensive treatment programs tested in developing countries might provide good study models for developed countries.

  • 12.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Development and evaluation of a questionnaire for measuring patient views of involvement in myocardial infarction care2008In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 7, no 3, p. 229-238Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Patients' involvement in their healthcare has been associated with improved treatment outcomes in chronic illness. Less is known about the affects of patient involvement on the outcomes of acute illness, such as myocardial infarction. A better understanding of patients' views and behaviour during hospitalization might improve clinical practice and enhance patient involvement.

    AIM

    The aim of this study was to develop and evaluate a questionnaire for measuring patients' perceptions of their involvement during hospitalization for myocardial infarction care.

    METHODS

    Focus groups with myocardial infarction patients provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among myocardial infarction patients at eleven Swedish hospitals.

    RESULTS

    The questionnaire demonstrated good validity and reliability, with six factors measuring patient views and behaviour regarding involvement.

    CONCLUSION

    The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of patients regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of patient-staff interaction that need improvement. Pinpointing such areas may lead to improved patient involvement, satisfaction with care, and treatment outcomes.

  • 13.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Staff views and behaviour regarding patient involvement in myocardial infarction care: development and evaluation of a questionnaire2008In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 7, no 1, p. 27-35Article in journal (Refereed)
    Abstract [en]

    BACKGROUND

    Healthcare legislation in several nations now dictates the responsibility of health care professionals to involve patients in decisions concerning care and treatment. However, few studies have examined the impact of patient involvement on the work of health care professionals. A better understanding of staff views and behaviour might enhance patient involvement.

    AIM

    The aim of this study was to develop and validate a questionnaire for measuring views and behaviour regarding patient involvement among physicians and nursing staff caring for patients with myocardial infarction.

    METHODS

    Focus groups among cardiology staff provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among cardiology staff at twelve Swedish hospitals.

    RESULTS

    The questionnaire demonstrated good validity and reliability, with two factors measuring staff views and four measuring behaviour.

    CONCLUSION

    The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of physicians and nursing staff regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of staff-patient interaction that need improvement, as well as implications of patient involvement for the work of each professional group on cardiology wards.

  • 14.
    Arnetz, Judith E.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Winblad, Ulrika
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Höglund, Anna T.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lindahl, Bertil
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Spångberg, Kalle
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Wallentin, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm , UCR-Uppsala Clinical Research Center.
    Wang, Yun
    Ager, Joel
    Arnetz, Bengt B.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social Medicine.
    Is patient involvement during hospitalization for acute myocardial infarction associated with post-discharge treatment outcome?: an exploratory study2010In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 13, no 3, p. 298-311Article in journal (Refereed)
    Abstract [en]

    Objective To investigate whether patient involvement during hospitalization for acute myocardial infarction (MI) was associated with health and behavioural outcomes 6–10 weeks after hospital discharge.

    Background Patient involvement has been associated with improved health outcomes in chronic disease, but less research has focused on the effects of patient involvement in acute conditions, such as MI.

    Design Self-administered questionnaire study. Questionnaire results were run against medical outcome data in a national database of cardiac patients.

    Setting and participants Cardiac patients (n = 591) on their first follow-up visit after hospitalization for MI at 11 Swedish hospitals.

    Main outcome measures Patient ratings of three questionnaire scales related to involvement; cardiovascular symptoms, medication compliance, participation in cardiac rehabilitation, and achievement of secondary preventive goals.

    Results More positive patient ratings of involvement were significantly associated with fewer cardiovascular symptoms 6–10 weeks after hospital discharge. In contrast, patients who attended cardiac rehabilitation and achieved the goals for smoking cessation and systolic blood pressure were significantly less satisfied with their involvement. No association was found between involvement ratings and medication compliance.

    Conclusion This study represents a first attempt to examine associations between patient involvement in the acute phase of illness and short-term health outcomes. Some significant associations between involvement and health and behavioural outcomes after acute MI were found. However, higher involvement ratings were not consistently associated with more desirable outcomes, and involvement during hospitalization was not associated with MI patient health and behaviour 6–10 weeks after hospital discharge to the extent hypothesized.

  • 15.
    Arvidsson, Per I.
    et al.
    Uppsala University, Science for Life Laboratory, SciLifeLab. Karolinska institutet.
    Domeij, Bengt
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Landegren, Ulf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Lind, Anna-Sara
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ullerås, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology.
    Öppenheten förstör chansen till patent2015In: Svenska dagbladet, ISSN 2001-3868Article in journal (Other (popular science, discussion, etc.))
  • 16.
    Atry, Ashkan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Transforming the Doping Culture: Whose responsibility, what responsibility?2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The doping culture represents an issue for sport and for society. Normative debates on doping have been mainly concerned with questions of the justifiability of doping. The practice of assigning responsibility for doping behaviour has chiefly been individual-based, focusing mainly on the individual athlete’s doping behaviour. The overarching aim of this thesis is to investigate the relevance and the importance of the ideas of responsibility in relation to ethical debates on doping. The more specific aim is to examine the possibility of broadening the scope of responsibility beyond the individual athlete, and to sketch a theoretical framework within which this expansion could be accommodated. In the first study, it is argued that bioethicists have a moral/professional responsibility to start out from a realistic and up-to-date view of genetics in ethical debates on gene doping, and that good bioethics requires good empirics. In study 2, the role played by affective processes in influencing athletes’ attitudes towards doping behaviour is investigated, both on an individual and on a collective level. It is concluded that an exclusive focus on individual-level rule violation and sanctions may entail overlooking the greater social picture and would prove to be ineffective in the long term. In study 3, the common doping-is-cheating arguments are examined and it is argued that they fail to capture vital features of people’s moral responses to doping behaviour. An alternative account of cheating in sport is presented in terms of failure to manifest good will and respect. It is concluded that putting cheating in the broader context of human interpersonal relationships makes evident the need to broaden the scope of moral responsibility and agency beyond the individual athlete. In study 4, the particular case of assigning responsibility for doping to sports physicians is used to examine the current individual-based approach to responsibility. This approach underestimates the scope of the responsibility by leaving out a range of other actors from the discourse of responsibility. The central conclusion of the thesis is that transforming the current doping culture requires broadening the scope of responsibility to include individuals and groups of individuals other than the athletes themselves.  

    List of papers
    1. Gene Doping and the Responsibility of Bioethicists
    Open this publication in new window or tab >>Gene Doping and the Responsibility of Bioethicists
    2011 (English)In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 5, no 2, p. 149-160Article in journal (Refereed) Published
    Abstract [en]

    In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.

    Keyword
    genetic enhancement; gene-doping; sport
    National Category
    Ethics
    Research subject
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206595 (URN)10.1080/17511321.2010.536960 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    2. Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport
    Open this publication in new window or tab >>Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport
    2012 (English)In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 6, no 4, p. 467-479Article in journal (Refereed) Published
    Abstract [en]

    Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes’ individual-level attitudes. We conclude that one-sided focus on individual rule- violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education.

    Keyword
    rule-violating behaviour, emotion, emotion culture, moral response, moral psychology
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206599 (URN)10.1080/17511321.2012.739194 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    3. Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping
    Open this publication in new window or tab >>Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping
    2013 (English)In: Physical Culture and Sport. Studies and Research, ISSN 2081-2221, E-ISSN 1899-4849, Vol. 59, no 1, p. 21-32Article in journal (Refereed) Published
    Abstract [en]

    One of the most common arguments in the discussion on doping is that it represents a form of cheating. In this paper, it is argued that common doping-is-cheating arguments based on notions of rule-violation and unfair advantage are inadequate, since they treat cheating as distinct from the structure and the logic of competitive sport. An alternative approach to cheating in sport as regards performance enhancement will be offered based on the ethics of participation in interpersonal relationships. This participatory perspective points towards the need to broaden our conception of agency and moral responsibility in relation to doping, beyond the notion of the individual “drug-cheat” who acts in a vacuum.

     

    Keyword
    Doping, Cheating, unfair advantage, rule violation, interpersonal relationships
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206601 (URN)10.2478/pcssr-2013-0020 (DOI)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2017-12-06Bibliographically approved
    4. Doping and The Participatory Responsibility of Sports Physicians
    Open this publication in new window or tab >>Doping and The Participatory Responsibility of Sports Physicians
    2013 (English)Article in journal (Other academic) Submitted
    Abstract [en]

    In this paper it will be argued that notwithstanding the need for more clear regulative measures in relation to sports physicians’ doping behaviour, the predominant medical/legalistic approach in/by itself is not sufficient, and fails in doing what sports anti-doping authorities whish it to do, i.e., to define and to assign sports physicians’ responsibility in an adequate way. High-performance sport is a form of social practice and sports physicians are an integrated part of the practice. In dealing with such a large-scale social process as high-performance sport, the above approach is lacking since it (a) proceeds from a conception of responsibility which limits the scope of responsibility in athletic settings, and (b) overlooks social aspects of responsibility and responsibility-attributing processes. Furthermore, it will be maintained that responsibility is relational, and as such, it is chiefly created and assigned within the social practice, rather than imposed from authoritative sources that are external to the practice itself. It will be concluded that sports physicians, given their position in relation to athletes and sports management, should actively assume prospective responsibilities beyond those pre- defined responsibilities that are expressed in rules, regulations and policies issued by sports’ governing bodies.

    Keyword
    Sports Physician, Doping, Responsibility
    National Category
    Ethics
    Identifiers
    urn:nbn:se:uu:diva-206605 (URN)
    Available from: 2013-09-02 Created: 2013-09-02 Last updated: 2014-01-23Bibliographically approved
  • 17.
    Atry, Ashkan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport2012In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 6, no 4, p. 467-479Article in journal (Refereed)
    Abstract [en]

    Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes’ individual-level attitudes. We conclude that one-sided focus on individual rule- violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education.

  • 18.
    Atry, Ashkan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Cheating is the name of the game: Conventional cheating arguments fail to articulate moral responses to doping2013In: Physical Culture and Sport. Studies and Research, ISSN 2081-2221, E-ISSN 1899-4849, Vol. 59, no 1, p. 21-32Article in journal (Refereed)
    Abstract [en]

    One of the most common arguments in the discussion on doping is that it represents a form of cheating. In this paper, it is argued that common doping-is-cheating arguments based on notions of rule-violation and unfair advantage are inadequate, since they treat cheating as distinct from the structure and the logic of competitive sport. An alternative approach to cheating in sport as regards performance enhancement will be offered based on the ethics of participation in interpersonal relationships. This participatory perspective points towards the need to broaden our conception of agency and moral responsibility in relation to doping, beyond the notion of the individual “drug-cheat” who acts in a vacuum.

     

  • 19.
    Atry, Ashkan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Doping and The Participatory Responsibility of Sports Physicians2013Article in journal (Other academic)
    Abstract [en]

    In this paper it will be argued that notwithstanding the need for more clear regulative measures in relation to sports physicians’ doping behaviour, the predominant medical/legalistic approach in/by itself is not sufficient, and fails in doing what sports anti-doping authorities whish it to do, i.e., to define and to assign sports physicians’ responsibility in an adequate way. High-performance sport is a form of social practice and sports physicians are an integrated part of the practice. In dealing with such a large-scale social process as high-performance sport, the above approach is lacking since it (a) proceeds from a conception of responsibility which limits the scope of responsibility in athletic settings, and (b) overlooks social aspects of responsibility and responsibility-attributing processes. Furthermore, it will be maintained that responsibility is relational, and as such, it is chiefly created and assigned within the social practice, rather than imposed from authoritative sources that are external to the practice itself. It will be concluded that sports physicians, given their position in relation to athletes and sports management, should actively assume prospective responsibilities beyond those pre- defined responsibilities that are expressed in rules, regulations and policies issued by sports’ governing bodies.

  • 20.
    Atry, Ashkan
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Gene Doping and the Responsibility of Bioethicists2011In: Sport, Ethics and Philosophy, ISSN 1751-1321, E-ISSN 1751-133X, Vol. 5, no 2, p. 149-160Article in journal (Refereed)
    Abstract [en]

    In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.

  • 21.
    Bayliss, Kerin
    et al.
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Raza, Karim
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England..
    Falahee, Marie
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Hansson, Mats G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Starling, Bella
    Univ Manchester, Manchester Acad Hlth Sci Ctr, Cent Manchester Univ Hosp NHS Fdn Trust, Publ Programmes Team, Manchester, Lancs, England..
    Stack, Rebecca
    Univ Birmingham, Coll Med & Dent Sci, Ctr Translat Inflammat Res, Birmingham, W Midlands, England.;Nottingham Trent Univ, Sch Social Sci, Div Psychol, Nottingham, England..
    Perceptions of predictive testing for those at risk of developing a chronic inflammatory disease: a meta-synthesis of qualitative studies2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 167-189Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 22. Bell, Jessica
    et al.
    Ancillotti, Mirko
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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 researchers2016In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 17, article id 37Article in journal (Refereed)
    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.

  • 23. Bengtsson, Ulrika
    et al.
    Kasperowski, Dick
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Kjellgren, Karin
    Developing an interactive mobile phone self-report system for self-management of hypertension. Part 1: Patient and professional perspectives2014In: Blood Pressure, ISSN 0803-7051, E-ISSN 1651-1999, Vol. 23, no 5, p. 288-295Article in journal (Refereed)
    Abstract [en]

    Low adherence remains a struggle in hypertension management, despite improvement efforts. Presuming that increased patient participation is a possible approach, we collaborated with patients and healthcare professionals to design a self-report system to support self-management. The study aimed to explore and describe relevant aspects of hypertension and hypertension treatment, for use in the development of an interactive mobile phone self-report system. It further aimed to suggest which clinical measures, lifestyle measures, symptoms and side-effects of treatment would be meaningful to include in such a system. Five focus group interviews were performed with 15 patients and 12 healthcare professionals, and data was analysed using thematic analysis. Patients suggested trust, a good relationship with caregivers, and well-being as important aspects of hypertension self-management. Furthermore, they regarded blood pressure, dizziness, stress, headache and tiredness as important outcomes to include. Patients sought to understand interconnections between symptoms and variations in blood pressure, whilst healthcare professionals doubted patients' ability to do so. Healthcare professionals emphasized accessibility, clear and consistent counselling, complication prevention and educational efforts. The study presents aspects of importance for follow-up to understand the interplay between blood pressure and daily life experiences for patients with hypertension.

  • 24. Bengtsson, Ulrika
    et al.
    Kjellgren, Karin
    Hoefer, Stefan
    Taft, Charles
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Developing an interactive mobile phone self-report system for self-management of hypertension. Part 2: Content validity and usability2014In: Blood Pressure, ISSN 0803-7051, E-ISSN 1651-1999, Vol. 23, no 5, p. 296-306Article in journal (Refereed)
    Abstract [en]

    Self-management support tools using technology may improve adherence to hypertension treatment. There is a need for user-friendly tools facilitating patients' understanding of the interconnections between blood pressure, wellbeing and lifestyle. This study aimed to examine comprehension, comprehensiveness and relevance of items, and further to evaluate the usability and reliability of an interactive hypertension-specifi c mobile phone self-report system. Areas important in supporting self-management and candidate items were derived from five focus group interviews with patients and healthcare professionals (n = 27), supplemented by a literature review. Items and response formats were drafted to meet specifications for mobile phone administration and were integrated into a mobile phone data-capture system. Content validity and usability were assessed iteratively in four rounds of cognitive interviews with patients (n = 21) and healthcare professionals (n = 4). Reliability was examined using a test-retest. Focus group analyses yielded six areas covered by 16 items. The cognitive interviews showed satisfactory item comprehension, relevance and coverage; however, one item was added. The mobile phone self-report system was reliable and perceived easy to use. The mobile phone self-report system appears efficiently to capture information relevant in patients' self-management of hypertension. Future studies need to evaluate the effectiveness of this tool in improving self-management of hypertension in clinical practice.

  • 25. Bergström, G
    et al.
    Berglund, G
    Blomberg, A
    Brandberg, J
    Engström, G
    Engvall, J
    Eriksson, M
    de Faire, U
    Flinck, A
    Hansson, Mats G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hedblad, B
    Hjelmgren, O
    Janson, Christer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Jernberg, T
    Johnsson, Å
    Johansson, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Radiology.
    Lind, Lars
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Löfdahl, C-G
    Melander, O
    Östgren, C J
    Persson, A
    Persson, M
    Sandström, A
    Schmidt, C
    Söderberg, S
    Sundström, Johan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Toren, K
    Waldenström, A
    Wedel, H
    Vikgren, J
    Fagerberg, B
    Rosengren, A
    The Swedish CArdioPulmonary BioImage Study: objectives and design2015In: Journal of Internal Medicine, ISSN 0954-6820, E-ISSN 1365-2796, Vol. 278, no 6, p. 645-659Article in journal (Refereed)
    Abstract [en]

    Cardiopulmonary diseases are major causes of death worldwide, but currently recommended strategies for diagnosis and prevention may be outdated because of recent changes in risk factor patterns. The Swedish CArdioPulmonarybioImage Study (SCAPIS) combines the use of new imaging technologies, advances in large-scale 'omics' and epidemiological analyses to extensively characterize a Swedish cohort of 30 000 men and women aged between 50 and 64 years. The information obtained will be used to improve risk prediction of cardiopulmonary diseases and optimize the ability to study disease mechanisms. A comprehensive pilot study in 1111 individuals, which was completed in 2012, demonstrated the feasibility and financial and ethical consequences of SCAPIS. Recruitment to the national, multicentre study has recently started.

  • 26.
    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 University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Zimmermann, Karin
    Charite, Berlin, Germany..
    BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets2016In: BIOMEDICAL DATA MANAGEMENT AND GRAPH ONLINE QUERYING, 2016, p. 89-105Conference paper (Refereed)
    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.

  • 27. Bisol, Giovanni Destro
    et al.
    Anagnostou, Paolo
    Capocasa, Marco
    Bencivelli, Silvia
    Cerroni, Andrea
    Contreras, Jorge
    Enke, Neela
    Fantini, Bernardino
    Greco, Pietro
    Heeney, Catherine
    Luzi, Daniela
    Manghi, Paolo
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Molloy, Jennifer C.
    Parenti, Fabio
    Wicherts, Jelte M.
    Boulton, Geoffrey
    Perspectives on Open Science and scientific data sharing: an interdisciplinary workshop2014In: J ANTHROPOL SCI, ISSN 1827-4765, Vol. 92, p. 179-200Article in journal (Refereed)
    Abstract [en]

    Looking at Open Science and Open Data from a broad perspective. This is the idea behind "Scientific data sharing: an interdisciplinary workshop", an initiative designed to foster dialogue between scholars from different scientific domains which was organized by the Istituto Italiano di Antropologia in Anagni, Italy, 2-4 September 2013. We here report summaries of the presentations and discussions at the meeting. They deal with four sets of issues: (i) setting a common framework, a general discussion of open data principles, values and opportunities; (ii) insights into scientific practices, a view of the way in which the open data movement is developing in a variety of scientific domains (biology, psychology, epidemiology and archaeology); (iii) a case study of human genomics, which was a trail-blazer in data sharing, and which encapsulates the tension that can occur between large-scale data sharing and one of the boundaries of openness, the protection of individual data; (iv) open science and the public, based on a round table discussion about the public communication of science and the societal implications of open science. There were three proposals for the planning of further interdisciplinary initiatives on open science. Firstly, there is a need to integrate top-down initiatives by governments, institutions and journals with bottom-up approaches from the scientific community. Secondly, more should be done to popularize the societal benefits of open science, not only in providing the evidence needed by citizens to draw their own conclusions on scientific issues that are of concern to them, but also explaining the direct benefits of data sharing in areas such as the control of infectious disease. Finally, introducing arguments from social sciences and humanities in the educational dissemination of open data may help students become more profoundly engaged with Open Science and look at science from a broader perspective.

  • 28. Bjugn, Roger
    et al.
    Farisco, Michele
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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?2015In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 13, no 2, p. 70-71Article in journal (Refereed)
  • 29. Björnsson, Gunnar
    et al.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Ullholm, Anders
    Argumentationsanalys: färdigheter för kritiskt tänkande2009 (ed. 2)Book (Other (popular science, discussion, etc.))
  • 30. Borry, P.
    et al.
    Bentzen, H. B.
    Budin-Ljosne, I.
    Cornel, M. C.
    Howard, H. C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Feeney, O.
    Jackson, L.
    Mascalzoni, D.
    Mendes, A.
    Peterlin, B.
    Riso, B.
    Shabani, M.
    Skirton, H.
    Sterckx, S.
    Vears, D.
    Wjst, M.
    Felzmann, H.
    The challenges of the expanded availability of genomic information: an agenda-setting paper2017In: J Community GenetArticle in journal (Refereed)
    Abstract [en]

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

  • 31. Borry, P.
    et al.
    Henneman, L.
    Lakeman, P.
    ten Kate, L. P.
    Cornel, M. C.
    Howard, H. C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Preconceptional genetic carrier testing and the commercial offer directly-to-consumers2011In: Hum Reprod, Vol. 26, no 5, p. 972-7Article in journal (Refereed)
    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.

  • 32. Borry, P.
    et al.
    Shabani, M.
    Howard, H. C.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children2014In: J Law Med Ethics, Vol. 42, no 1, p. 19-27Article in journal (Refereed)
    Abstract [en]

    The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their "right not to know" should be respected as much as possible. Testing a minor early in life eliminates the possibility for the minor to make use of his or her "right not to know." The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population.

  • 33. Borry, Pascal
    et al.
    Bentzen, Heidi Beate
    Budin-Ljøsne, Isabelle
    Cornel, Martina C
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Feeney, Oliver
    Jackson, Leigh
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Mendes, Álvaro
    Peterlin, Borut
    Riso, Brigida
    Shabani, Mahsa
    Skirton, Heather
    Sterckx, Sigrid
    Vears, Danya
    Wjst, Matthias
    Felzmann, Heike
    The challenges of the expanded availability of genomic information: an agenda-setting paper.2018In: Journal of Community Genetics, ISSN 1868-310X, E-ISSN 1868-6001, Vol. 9, no 2, p. 103-116Article in journal (Refereed)
    Abstract [en]

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

  • 34. Borry, Pascal
    et al.
    Cornel, Martina C
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market.2010In: Journal of community genetics, ISSN 1868-310X, Vol. 1, no 3, p. 101-106Article in journal (Refereed)
    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.

  • 35. Borry, Pascal
    et al.
    Henneman, Lidewij
    Lakeman, Phillis
    ten Kate, Leo P
    Cornel, Martina C
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Preconceptional genetic carrier testing and the commercial offer directly-to-consumers.2011In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 26, no 5, p. 972-7Article in journal (Refereed)
    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.

  • 36. Borry, Pascal
    et al.
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Sénécal, Karine
    Avard, Denise
    Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.2010In: Familial Cancer, ISSN 1389-9600, E-ISSN 1573-7292, Vol. 9, no 1, p. 51-9Article in journal (Refereed)
    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.

  • 37. Borry, Pascal
    et al.
    Rusu, Olivia
    Howard, Heidi C
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Genetic testing: anonymity of sperm donors under threat.2013In: Nature, ISSN 0028-0836, E-ISSN 1476-4687, Vol. 496, no 7444, p. 169-Article in journal (Refereed)
  • 38. 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 University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Legislation on direct-to-consumer genetic testing in seven European countries.2012In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 20, no 7, p. 715-21Article in journal (Refereed)
    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.

  • 39. Buchser, William
    et al.
    Slepak, Tania
    Gutierrez Arenas, Omar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Bixby, John
    Lemmon, Vance
    Kinase/phosphatase overexpression reveals pathways regulating hippocampal neuron morphology2010In: Molecular Systems Biology, ISSN 1744-4292, E-ISSN 1744-4292Article in journal (Refereed)
  • 40.
    Budin-Ljosne, Isabelle
    et al.
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway..
    Teare, Harriet J. A.
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Kaye, Jane
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Beck, Stephan
    UCL, UCL Canc Inst, London, England..
    Bentzen, Heidi Beate
    Univ Oslo, Inst Hlth & Soc, Ctr Med Eth, POB 1130, NO-0318 Oslo, Norway.;Cancergen No, Norwegian Canc Genom Consortium, Oslo, Norway.;Univ Oslo, Norwegian Res Ctr Comp & Law, Fac Law, Oslo, Norway..
    Caenazzo, Luciana
    Univ Padua, Padua, Italy..
    Collett, Clive
    Hlth Res Author, London, England..
    D'Abramo, Flavio
    Free Univ Berlin, Focus Area DynAge, Berlin, Germany..
    Felzmann, Heike
    NUI Galway, Ctr Bioeth Res & Anal, Galway, Ireland..
    Finlay, Teresa
    Univ Oxford, Nuffield Dept Populat Hlth, Ctr Hlth Law & Emerging Technol HeLEX, Oxford, England..
    Javaid, Muhammad Kassim
    Univ Oxford, Nuffield Dept Orthopaed Rheumatol & Musculoskelet, NIHR Musculoskeletal Biomed Res Unit, Oxford, England..
    Jones, Erica
    UCL, UCL Canc Inst, London, England..
    Katic, Visnja
    Univ Rijeka, Sch Med, Rijeka, Croatia..
    Simpson, Amy
    Genet Alliance UK, London, England..
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. EURAC, Ctr Biomed, Bolzano, Italy..
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research2017In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 18, article id 4Article in journal (Refereed)
    Abstract [en]

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

  • 41. Budin-Ljøsne, Isabelle
    et al.
    Mascalzoni, Deborah
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Soini, Sirpa
    Machado, Helena
    Kaye, Jane
    Bentzen, Heidi Beate
    Rial-Sebbag, Emmanuelle
    D'Abramo, Flavio
    Witt, Michał
    Schamps, Geneviève
    Katić, Višnja
    Krajnovic, Dusanca
    Harris, Jennifer R
    Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?2016In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 14, no 3, p. 241-248Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges.

    MATERIALS AND METHODS: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach.

    RESULTS: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process.

    CONCLUSIONS: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants.

  • 42. Buiting, Hilde M.
    et al.
    van Delden, Johannes J. M.
    Rietjens, Judith A. C.
    Onwuteaka-Philipsen, Bregje D.
    Bilsen, Johan
    Fischer, Susanne
    Löfmark, Rurik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Miccinesi, Guido
    Norup, Michael
    van der Heide, Agnes
    Forgoing artificial nutrition or hydration in patients nearing death in six European countries2007In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 34, no 3, p. 305-314Article in journal (Refereed)
    Abstract [en]

    Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the Practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shorlening drugs to relieve symptoms than other Patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.

  • 43.
    Calvo, Patrici
    et al.
    Universitat Jaume I.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Civil Society Participation in the Management of the Common Good: A Case of Ethics in Biological Resource Centres2014In: Common Goods: New Forms of Participation of Civil Society in Democracy and the Economy / [ed] Daniel Pallares Dominguez & Stefan Eriksson, Castellón: Universitat Jaume I , 2014, p. 7-19Chapter in book (Other academic)
    Abstract [en]

    The management of commons is now at the centre of researchers' attention in many branches of science, particularly those related to the human or social sciences. This paper seeks to demonstrate how civil society participation in common goods or resources is not only possible but is also desirable for society because of the medium and long-term benefits it offers involved and/or affected parties. To this end, we examine the falsity of the discourse underlying the supposed incompetence of civil society to cooperate interpersonally in the pursuit of common objectives, and also analyse a specific example of the necessary and possible participation of civil society in managing common goods through biobanks.

  • 44. Cambon-Thomsen, Anne
    et al.
    Bovenberg, Jasper
    Lavitrano, Marialuisa
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    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 Infrastructure2015In: Tissue Antigens, ISSN 0001-2815, E-ISSN 1399-0039, Vol. 85, no 5, p. 372-372Article in journal (Refereed)
  • 45. Chen, Gang
    et al.
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Stevens, Katherine
    Brazier, John
    Huynh, Elisabeth
    Sawyer, Michael
    Roberts, Rachel
    Ratcliffe, Julie
    Assessing the Health-Related Quality of Life of Australian Adolescents: An Empirical Comparison of the Child Health Utility 9D and EQ-5D-Y Instruments2015In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 18, no 4, p. 432-438Article in journal (Refereed)
    Abstract [en]

    Objectives: To examine the performance of two recently developed preference-based instruments-the Child Health Utility 9D (CHU9D) and the EuroQol five-dimensional questionnaire Youth version (EQ-5D-Y)-in assessing the health related quality of life (HRQOL) of Australian adolescents. Methods: An online survey including the CHU9D and the EQ-5D-Y, self-reported health status, and a series of sociodemographic questions was developed for administration to a community-based sample of adolescents (aged 11-17 years). Individual responses to both instruments were translated into utilities using scoring algorithms derived from the Australian adult general population. Results: A total of 2020 adolescents completed the online survey. The mean +/- SD utilities of the CHU9D and the EQ-5D-Y were very similar (0.82 +/- 0.13 and 0.83 +/- 0.19, respectively), and the intraclass correlation coefficient (0.80) suggested good levels of agreement. Both instruments were able to discriminate according to varying levels of self-reported health status (P < 0.001). Although exhibiting good levels of agreement overall, some wide divergences were apparent at an individual level. Conclusions: The study results are encouraging and illustrate the potential for both the CHU9D and the EQ-5D-Y to be more widely used for measuring and valuing the HRQOL of adolescent populations in Australia and internationally. Generating adolescent-specific scoring algorithms pertaining to each instrument and an empirical comparison of the resulting utilities is a natural next step. More evidence is required from the application of the CHU9D and the EQ-5D-Y in specific patient groups in adolescent health settings to inform the choice of instrument for measuring and valuing the HRQOL for the economic evaluation of adolescent health care treatments and services.

  • 46. Coast, J
    et al.
    Salisbury, C
    de Berker, D
    Noble, A
    Horrocks, S
    Peters, T J
    Flynn, T N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Preferences for aspects of a dermatology consultation.2006In: British Journal of Dermatology, ISSN 0007-0963, E-ISSN 1365-2133, Vol. 155, no 2, p. 387-92Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: General practitioners with special interests (GPSIs) are increasingly being used to provide dermatology services in the U.K. Little is known about U.K. dermatology patient attitudes to proposed variations in secondary care service delivery or the values they attach to aspects of the care they receive.

    OBJECTIVES: To quantify preferences for different attributes of care within dermatology secondary care services.

    METHODS: Attributes of care that are important to dermatology patients were derived using in-depth qualitative interviews with 19 patients at different points in the care pathway. A discrete choice experiment using 'best-worst scaling' was sent by post to 119 patients referred to secondary care dermatology services and suitable for GPSI care who had agreed to participate in research.

    RESULTS: Four attributes were derived from the qualitative work: waiting, expertise, thorough care and convenience. For the discrete choice experiment, 99 patients returned questionnaires, 93 of which contained sufficient data for analysis. All attributes were found to be quantitatively important. The attribute of greatest importance was expertise of the doctor, while waiting time was of least importance. Respondents were willing to wait longer than the current 3 months maximum to receive care that was thorough, 2.1 months to see a team led by an expert and 1.3 months to attend a consultation that is easy to get to.

    CONCLUSIONS: Although the need to reduce outpatient waiting times is a key policy driver behind the expansion of GPSI services, this does not appear to be the most important issue for patients. The thoroughness with which the consultation is provided and the expertise of the clinician seen are higher priorities.

  • 47. Coast, Joanna
    et al.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Natarajan, Lucy
    Sproston, Kerry
    Lewis, Jane
    Louviere, Jordan J
    Peters, Tim J
    Valuing the ICECAP capability index for older people.2008In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 67, no 5, p. 874-82Article in journal (Refereed)
    Abstract [en]

    This paper reports the first application of the capabilities approach to the development and valuation of an instrument for use in the economic evaluation of health and social care interventions. The ICECAP index of capability for older people focuses on quality of life rather than health or other influences on quality of life, and is intended to be used in decision making across health and social care in the UK. The measure draws on previous qualitative work in which five conceptual attributes were developed: attachment, security, role, enjoyment and control. This paper details the innovative use within health economics of further iterative qualitative work in the UK among 19 informants to refine lay terminology for each of the attributes and levels of attributes used in the eventual index. For the first time within quality of life measurement for economic evaluation, a best-worst scaling exercise has been used to estimate general population values (albeit for the population of those aged 65+ years) for the levels of attributes, with values anchored at one for full capability and zero for no capability. Death was assumed to be a state in which there is no capability. The values obtained indicate that attachment is the attribute with greatest impact but all attributes contribute to the total estimation of capability. Values that were estimated are feasible for use in practical applications of the index to measure the impact of health and social care interventions.

  • 48. Coast, Joanna
    et al.
    Peters, Tim J
    Natarajan, Lucy
    Sproston, Kerry
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people.2008In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 17, no 7, p. 967-76Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The index of capability (ICECAP) was developed using in-depth interviews with 40 older people and comprises five attributes: attachment, security, enjoyment, role and control. This paper explores the construct validity of these five capability attributes.

    METHODS: An interview survey was conducted with individuals aged 65 and over located across the UK. Data were analysed in six categories (socio-demographic variables and general well-being, contact with others, health, nature of the locality and environment, social support and participation) using chi-squared tests (for categorical variables) or one-way analysis of variance (for continuous variables).

    RESULTS: About 315 individuals were interviewed (response rate 66%). Relationships were generally as anticipated with, for example: strong relationships between age and capability and well-being and capability, but no relationships between capability and either sex or social class; strong relationships between physical measures of health and role, enjoyment and control, and between mental health measures and attachment and enjoyment.

    CONCLUSIONS: This study provides some early evidence for the construct validity of the ICECAP measure. Where anticipated relationships were not observed this might in part be explained in that the ICECAP index asks about capability, but the factors with which associations were examined were largely and inevitably measures of function.

  • 49. Cohen, J.
    et al.
    Bilsen, J.
    Addington-Hall, J.
    Lömark, Rurik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Karolinska institutet.
    Miccinesi, G.
    Kaasa, S.
    Onwuteaka-Philipsen, B.
    Deliens, L.
    Population-based study of dying in hospital in six European countries2008In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 22, no 6, p. 702-710Article in journal (Refereed)
    Abstract [en]

    This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.

  • 50. Cohen, Joachim
    et al.
    Bilsen, Johan
    Fischer, Susanne
    Löfmark, Rurik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Norup, Michael
    van der Heide, Agnes
    Miccinesi, Guido
    Deliens, Luc
    End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference?2007In: Journal of Epidemiology and Community Health, ISSN 0143-005X, E-ISSN 1470-2738, Vol. 61, no 12, p. 1062-1068Article in journal (Refereed)
    Abstract [en]

    Objective: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. Design: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. Setting: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part). Main outcome measures: The incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions. Results: Response rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3-5.1%); non-treatment decisions generally occurred more often in hospitals (22.4-41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes. Conclusion: The results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.

1234567 1 - 50 of 466
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf