uu.seUppsala University Publications
Change search
Refine search result
12 1 - 50 of 94
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.
    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.))
  • 2.
    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.

  • 3.
    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.

     

  • 4.
    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.

  • 5.
    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.

  • 6.
    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.

  • 7.
    Berglund, G
    et al.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences. Caring Sciences.
    Lidén, A
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences. Department of Surgical Sciences. Caring Sciences.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Oberg, K
    Department of Medical Sciences. Endokrin onkologi.
    Sjödén, P O
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Nordin, K
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1).2003In: Fam Cancer, ISSN 1389-9600, Vol. 2, no 1, p. 27-33Article in journal (Refereed)
  • 8. 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.

  • 9. 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)
  • 10. de Bekker-Grob, Esther
    et al.
    Berlin, Conny
    Levitan, Bennet
    Raza, Karim
    Christoforidi, Kalliopi
    Cleemput, Irina
    Pelouchova, Jana
    Enzmann, Harald
    Cook, Nigel
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: The PREFER Public–Private Project2017In: Patient, ISSN 1178-1653, E-ISSN 1178-1661, Vol. 10, no 3, p. 263-266Article in journal (Refereed)
  • 11.
    Evers, Kathinka
    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.
    Stjernschantz Forsberg, Joanna
    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
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Commercialization of Biobanks2012In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 10, no 1, p. 45-47Article in journal (Refereed)
    Abstract [en]

    Biobank policy and regulations profoundly vary between different societies. One area with profound differences in culture and tradition concerns commercialization, and the possibility of using the human body as a capital resource. In the United States there is acceptance of this possibility, whereas European law is based on principles that categorically prohibit selling parts of the human body. We suggest that questions of commercialization in the area of biobanking must be considered in relation to different ethical values, notably the principle of best possible use of collected biobank materials for the benefit of vital patient interests.

  • 12.
    Falahee, Marie
    et al.
    Univ Birmingham, Birmingham, W Midlands, England..
    Simons, Gwenda
    Univ Birmingham, Birmingham, W Midlands, England..
    Buckley, Christopher D.
    Univ Birmingham, Birmingham, W Midlands, England.;Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Hansson, M G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Stack, Rebecca J.
    Univ Birmingham, Birmingham, W Midlands, England.;Trent Univ, Nottingham, England..
    Raza, Karim
    Sandwell & West Birmingham Hosp NHS Trust, Birmingham, W Midlands, England..
    Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation2017In: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 69, no 10, p. 1558-1565Article in journal (Refereed)
    Abstract [en]

    Objective: To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives concerning risk and its modulation.

    Methods: Twenty-one RA patients took part in semistructured interviews.

    Results: Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of the relatives' perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions. Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on the quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies. Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualized as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.

    Conclusion: Information about risk factors for RA, and the potential impact of RA on the quality of life, is needed to support family communication about RA risk. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes.

  • 13.
    Forsberg, Joanna Stjernschantz
    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.
    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.
    Biobank Research and Consent: Authors' reply to Sheehan2011In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 343, p. d6901-Article in journal (Refereed)
  • 14.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    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.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    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.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-141Article in journal (Refereed)
    Abstract [en]

    It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

  • 15.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Hansson, Mats
    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.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials. A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis. The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable. Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 16.
    Grady, Christine
    et al.
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Eckstein, Lisa
    Univ Tasmania, Fac Law, Hobart, Tas 7001, Australia..
    Berkman, Ben
    NHGRI, Bethesda, MD USA..
    Brock, Dan
    Harvard Univ, Sch Med, Dept Social Med, Div Med Eth, Cambridge, MA 02138 USA..
    Cook-Deegan, Robert
    Duke Inst Genome Sci & Policy, Durham, NC USA..
    Fullerton, Stephanie M.
    Univ Washington, Sch Med, Genome Eth Law & Policy, Seattle, WA 98195 USA..
    Greely, Hank
    Stanford Law Sch, Crown Quadrangle, Stanford, CA USA..
    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.
    Hull, Sara
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA.;NHGRI, Bioeth Core, Bethesda, MD USA..
    Kim, Scott
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Lo, Bernie
    Greenwall Fdn, New York, NY USA..
    Pentz, Rebecca
    Emory Univ, Ctr Eth, Winship Canc Inst, Atlanta, GA 30322 USA..
    Rodriguez, Laura
    NHGRI, Div Policy Commun & Educ, Bethesda, MD USA..
    Weil, Carol
    NCI, Canc Diag Program, Bethesda, MD 20892 USA..
    Wilfond, Benjamin S.
    Seattle Childrens Hosp, Seattle, WA USA..
    Wendler, David
    NIH, Ctr Clin, Dept Bioeth, Bethesda, MD 20892 USA..
    Broad Consent for Research With Biological Samples: Workshop Conclusions2015In: American Journal of Bioethics, ISSN 1526-5161, E-ISSN 1536-0075, Vol. 15, no 9, p. 34-42Article in journal (Refereed)
    Abstract [en]

    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.

  • 17.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Att respektera människor som moraliskt och politiskt myndiga - Om integritet som etiskt begrepp med tillämpning på medicinsk forskning2003In: Annales. Acadmiae Regiae Scientiarum Upsaliensis 35, 2003, p. 57-65Chapter in book (Other scientific)
  • 18.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Building on relationships of trust in biobank research.2005In: J Med Ethics, ISSN 0306-6800, Vol. 31, no 7, p. 415-8Article in journal (Refereed)
  • 19.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Ethical management of hereditary cancer information.1999In: Acta Oncol, ISSN 0284-186X, Vol. 38, no 3, p. 305-8Article in journal (Refereed)
  • 20.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Good Conduct in Research. An extract from the Swedish parliamentary investigation into research ethics 19991999Collection (editor) (Other scientific)
  • 21.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Idédokument från konferensen genetisk insyn. Genforskningens konsekvenser för individ och samhälle. Probleminventering - Idéer till forskningsinitiativ1994Collection (editor) (Other scientific)
  • 22.
    Hansson, M G
    Uppsala University.
    Introduction to discussion on ethical matters1998In: Acta Agriculture Scandinavica, Vol. suppl 29, p. 62-66Article in journal (Refereed)
  • 23.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Swedish biotechnology and bioethics go hand in hand2002Other (Other scientific)
  • 24.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    The ethics of PGD-regulation2006In: PGD and Embryo Selection, The Nordic Committee on Bioethics, Copenhagen 2006 , 2006, p. 82-92Chapter in book (Refereed)
  • 25.
    Hansson, M G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Vilket värde har våra värderingar kring genteknik?2002In: Kungl. Skogs- och Lantbruksakademiens Tidskrift, no 1, p. 31-35Article in journal (Other scientific)
  • 26.
    Hansson, Mats
    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 should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?2012In: Theoretical Medicine and Bioethics, ISSN 1386-7415, E-ISSN 1573-0980, Vol. 33, no 4, p. 313-323Article in journal (Refereed)
    Abstract [en]

    Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is an inherent, morally normative requirement of health care, and argue that quality concerns in this sense may be balanced with privacy concerns.

  • 27.
    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.
    Access to health data in registries and the cost of privacy concerns: introducing a privacy ombudsman while extending access to data2015In: Information and Law in Transition: Freedom of Speech, the Internet, Privacy and Democracy in the 21st Century / [ed] Lind AS, Reichel J & Österdahl, I, Liber, 2015, 1, p. 325-338Chapter in book (Refereed)
  • 28.
    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.
    Biobanks: Validate gene findings before telling donors2012In: Nature, ISSN 0028-0836, E-ISSN 1476-4687, Vol. 484, no 7395, p. 455-455Article in journal (Refereed)
  • 29.
    Hansson, Mats G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Combining efficiency and concerns about integrity when using human biobanks.2006In: Stud Hist Philos Biol Biomed Sci, ISSN 1369-8486, Vol. 37, no 3, p. 520-32Article in journal (Refereed)
  • 30.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    For the safety and benefit of current and future patients2007In: Pathobiology (Basel), ISSN 1015-2008, E-ISSN 1423-0291, Vol. 74, no 4, p. 198-205Article in journal (Refereed)
    Abstract [en]

    Pathology biobanks are vital assets for medical care and treatment of current and future patients. In association with good clinical data they are also useful for biomedical research regarding the underlying mechanisms of human disease. Recent regulations have suggested the obtainment of a specific and explicit informed consent as a prerequisite for using human tissue samples with these ends in mind. However, the choice and strict use of informed consent for balancing conflicting interests associated with biobank-related research can in practice be detrimental to patient safety with regard to diagnosis, medical care and treatment. In this article I argue that a 'safety principle' should have priority and suggest how this could be implemented in clinical practice and in association with biomedical research.

  • 31.
    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.
    Genomics for policy makers and for researchers. Review of: Genomics and society-Ethical, Legal, Cultural and Socioeconomic Implication. Edited by: Dhavendra Kumar and Ruth Chadwick. 2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 12, p. 1835-1835Article, book review (Other academic)
  • 32.
    Hansson, Mats G.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences. Biomedical Ethics.
    In the interests of efficiency and integrity2001In: The Use of Human Biobanks: Ethical, Social, Economical and Legal Aspects, Uppsala University , 2001, p. 35-40Chapter in book (Other scientific)
  • 33.
    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.
    Taking the patient's side: the ethics of pharmacogenetics2010In: Personalized Medicine, ISSN 1741-0541, Vol. 7, no 1, p. 75-85Article in journal (Refereed)
    Abstract [en]

    From the perspective of current and future patients, the development of the field of pharmacogenetics is of immense interest. The encouraging vision that is now being established is that we may move from trial and error therapies to evidence-based personalized medicine in clinical practice. However, research and the application of pharmacogenetics to clinical practice are believed to raise a host of controversial ethical issues. Some of these are related to the research process, for example, confidentiality and informed consent in association with human tissue sampling. Other issues arise on a societal level, for example, issues regarding justice and the use of race or ethnicity as proxies for genotyping. in this perspective, I comment on this debate and also suggest what we may learn from previous discussions regarding DNA testing and gene transfer methods. Arguably, the most important ethical perspective in medical research and drug development is related to the interests of patients wanting medical treatment that is both effective and carries low risks of adverse effects. Risk:benefit ratios must always be compared with existing alternatives, and while the risk of adverse effects may be tolerable for some individuals, owing to genetic reasons, this may not be relevant for others. This will have consequences for regulatory policies regarding drug development. In the future, personalized medicine will also need to take epigenetic and environmental factors into consideration.

  • 34.
    Hansson, Mats G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Biomedical ethics.
    The Private Sphere: An Emotional Territory and Its Agent2008Book (Refereed)
  • 35.
    Hansson, Mats G.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences. Biomedical Ethics.
    The Use of Human Biobanks: Ethical, Social, Economical and Legal Aspects2001Book (Other scientific)
  • 36.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. ..
    Bouder, Frederic
    Dept Technol & Soc Studies, Maastricht.
    Howard, Heidi Carmen
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Genetics and risk - an exploration of conceptual approaches to genetic risk2018In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal (Other academic)
  • 37.
    Hansson, Mats G
    et al.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Dillner, Joakim
    Bartram, Claus R
    Carlson, Joyce A
    Helgesson, Gert
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Should donors be allowed to give broad consent to future biobank research?2006In: Lancet Oncol, ISSN 1470-2045, Vol. 7, no 3, p. 266-9Article in journal (Refereed)
  • 38.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Gattorno, Marco
    Stjernschantz Forsberg, Joanna
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Feltelius, Nils
    Martini, Alberto
    Ruperto, Nicolino
    Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases2012In: Archives of Disease in Childhood, ISSN 0003-9888, E-ISSN 1468-2044, Vol. 97, no 6, p. 561-563Article in journal (Refereed)
  • 39.
    Hansson, Mats G
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hakama, Matti
    Ulysses contracts for the doctor and for the patient2010In: Contemporary Clinical Trials, ISSN 1559-2030, Vol. 31, no 3, p. 202-206Article in journal (Refereed)
    Abstract [en]

    Research subjects participating in randomised clinical trials have a right to drop out of a study without specifying any reason for this. However, leaving a trial may be contradictory to their own general interests in medical research since drop outs may lead to biased conclusions and loss of valuable medical information. We suggest in this paper that self-binding "Ulysses contracts" that are non-exploitative and based on autonomous decisions by research subjects as well as by investigating doctors should be implemented with stopping rules adjusted to the needs of different kinds of randomised clinical trials.

  • 40.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Helgesson, Gert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Wessman, Richard
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.
    Jaenisch, Rudolf
    Commentary: Isolated Stem Cells - Patentable as Cultural Artifacts?2007In: Stem Cells, ISSN 1066-5099, E-ISSN 1549-4918, Vol. 25, no 6, p. 1507-1510Article in journal (Refereed)
    Abstract [en]

    This article argues that an isolated embryonic stem cell basically represents a cultural artifact that has no equivalent to cells of the embryo, and that it is likely that the isolation of adult stem cells has a similar consequence. An isolated stem cell could thus be distinguished as something other than the stem cell existing as part of a human body. Since isolation of stem cells implies modification, product patents should, where the results carry enough novelty, inventive step, and potential for industrial application, as a matter of principle be a viable option for patent authorities. Questions of morality, which may affect the patentability, should also be viewed in light of the distinction between isolated result and body part. At the same time, it is essential that patent authorities do not accept broad patent claims that will be detrimental to research. Disclosure of potential conflicts of interest is found at the end of this article.

  • 41.
    Hansson, Mats G
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Tuvemo, Torsten
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Olsen, Leif
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences.
    Rodriguez, Alina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Psychology.
    Ethics takes time, but not that long2007In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 8, no 6, p. 1-7Article in journal (Refereed)
    Abstract [en]

    Background: Time and communication are important aspects of the medical consultation.Physician behavior in real-life pediatric consultations in relation to ethical practice, such as informedconsent (provision of information, understanding), respect for integrity and patient autonomy(decision-making), has not been subjected to thorough empirical investigation. Such investigationsare important tools in developing sound ethical praxis.

    Methods: 21 consultations for inguinal hernia were video recorded and observers independentlyassessed global impressions of provision of information, understanding, respect for integrity, andparticipation in decision making. The consultations were analyzed for the occurrence of specificphysician verbal and nonverbal behaviors and length of time in minutes.

    Results: All of the consultations took less than 20 minutes, the majority consisting of 10 minutesor less. Despite this narrow time frame, we found strong and consistent association betweenincreasing time and higher ratings on all components of ethical practice: information, (β = .43),understanding (β = .52), respect for integrity (β = .60), and decision making (β = .43). Positivenonverbal behaviors by physicians during the consultation were associated particularly with respectfor integrity (β =.36). Positive behaviors by physicians during the physical examination were relatedto respect for children's integrity.

    Conclusion: Time was of essence for the ethical encounter. Further, verbal and nonverbal positivebehaviors by the physicians also contributed to higher ratings of ethical aspects. These results canhelp to improve quality of ethical practice in pediatric settings and are of relevance for teaching andpolicy makers.

  • 42.
    Hansson, Mats G
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Levin, Marianne
    Biobanks as resources for health2003Collection (editor) (Other academic)
  • 43.
    Hansson, Mats G
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Levin, Marianne
    Biobanks as Resources for Health2003In: Biobanks as Resources for Health / [ed] MG Hansson & M Levin, Uppsala universitet, 2003, p. 9-20Chapter in book (Other academic)
  • 44.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Lochmuller, Hanns
    Newcastle Univ, Inst Med Genet, John Walton Muscular Dystrophy Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England..
    Riess, Olaf
    Univ Tubingen, Rare Dis Ctr, Inst Med Genet & Appl Genom, Tubingen, Germany..
    Schaefer, Franz
    Heidelberg Univ, Ctr Pediat & Adolescent Med, Div Pediat Nephrol, Heidelberg, Germany..
    Orth, Michael
    Ulm Univ Hosp, Dept Neurol, Ulm, Germany..
    Rubinstein, Yaffa
    NIH, ORDR, Natl Ctr Adv Translat Sci, Bldg 10, Bethesda, MD 20892 USA..
    Molster, Caron
    Dept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia..
    Dawkins, Hugh
    Dept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia.;Murdoch Univ, Ctr Comparat Genom, Murdoch, WA, Australia.;Curtin Univ Technol, Ctr Populat Hlth Res, Bentley, WA, Australia.;Univ Western Australia, Sch Pathol & Lab Med, Nedlands, WA, Australia..
    Taruscio, Domenica
    Ist Super Sanita, Natl Ctr Rare Dis, Rome, Italy..
    Posada, Manuel
    SpainRDR, ISCIII, Inst rare Dis Res, Madrid, Spain.;CIBERER, Madrid, Spain..
    Woods, Simon
    Newcastle Univ, Policy Eth & Life Sci Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England..
    The risk of re-identification versus the need to identify individuals in rare disease research2016In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 24, no 11, p. 1553-1558Article in journal (Refereed)
    Abstract [en]

    There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

  • 45.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Maschke, Karen J.
    Biobanks: questioning distinctions2009In: Science, ISSN 0036-8075, E-ISSN 1095-9203, Vol. 326, no 5954, p. 797-797Article in journal (Refereed)
  • 46.
    Hansson, Mats G
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Simonsson, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
    Feltelius, Nils
    Forsberg, Joanna Stjernschantz
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hasford, Joerg
    Medical registries represent vital patient interests and should not be dismantled by stricter regulation2012In: Cancer Epidemiology, ISSN 1877-7821, E-ISSN 1877-783X, Vol. 36, no 6, p. 575-578Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Medical registries serve patients as beneficiaries of quality standards and new treatment opportunities. However, it has been argued that registries threaten patient privacy interests and should therefore be more strictly regulated.

    METHODS AND RESULTS:

    With the European Treatment and Outcome Study for Chronic Myeloid Leukemia as a concrete example we identify and describe how four of the major arguments put forward for stricter regulation fail.

    CONCLUSION:

    We conclude that medical registries should be promoted both for research and quality control, and that the regulatory bureaucratic burden should be reduced.

  • 47.
    Hansson, Mats G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    van Ommen, Gert Jan
    Chadwick, Ruth
    Dillner, Joakim
    Patients would benefit from simplified ethical review and consent procedure2013In: The Lancet Oncology, ISSN 1470-2045, E-ISSN 1474-5488, Vol. 14, no 6, p. 451-453Article in journal (Refereed)
  • 48.
    Helgesson, Gert
    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.
    Dillner, Joakim
    Carlson, Joyce
    Bartram, Claus R
    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.
    Ethical framework for previously collected biobank samples2007In: Nature Biotechnology, ISSN 1087-0156, E-ISSN 1546-1696, Vol. 25, no 9, p. 973-976Article in journal (Refereed)
  • 49. Hultman, Christina M
    et al.
    Lindgren, Ann-Christin
    Hansson, Mats G
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Biomedical ethics.
    Carlstedt-Duke, Jan
    Ritzen, Martin
    Persson, Ingemar
    Kieler, Helle
    Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence2009In: Public Health Ethics, ISSN 1754-9973, E-ISSN 1754-9981, Vol. 2, no 1, p. 30-36Article in journal (Refereed)
    Abstract [en]

    Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height.Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How shouldone deal with informed consent for such a study?We designed a qualitative study with semi-structured telephoneinterviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women.Major themes were a wish to be involved and a positive attitude to the proposed register research. The womendid not express worry after reading the study protocol, but did convey considerable frustration that this researchhad not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participationrate and a concern over missing data. The selection of information and consent or the decision to goahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted,but acknowledge the primary goal of answering important questions. Our study provides support for safeguardingprivacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientificvalue by requesting for informed consent.

  • 50. Illes, Judy
    et al.
    Blakemore, Colin
    Hansson, Mats G
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Hensch, Takao K
    Leshner, Alan
    Maestre, Gladys
    Magistretti, Pierre
    Quirion, Rémi
    Strata, Piergiorgio
    Science and society: International perspectives on engaging the public in neuroethics.2005In: Nat Rev Neurosci, ISSN 1471-003X, Vol. 6, no 12, p. 977-82Article in journal (Refereed)
12 1 - 50 of 94
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