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  • 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.

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  • 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 W.
    et al.
    Erasmus Univerity of Rotterdam.
    Berlin, Conny
    Novartis.
    Levitan, Bennett
    Jansen&Jansen.
    Raza, Karim
    Birmingham University.
    Christoforidi, Kalliopi
    European Patient Forum.
    Cleemput, Irina
    KCE.
    Pelouchova, Jana
    ECPC.
    Enzmann, Harald
    Cook, Nigel
    Novartis.
    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. 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)
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    fulltext
  • 12.
    Drevin, Jennifer
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nyholm, Dag
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    Widner, Håkan
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Van Vliet, Trinette
    Skane Univ Hosp, Neurol Clin, S-22185 Lund, Sweden..
    Viberg Johansson, Jennifer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Inst Future Studies, Hollandargatan 13, S-11136 Stockholm, Sweden..
    Jiltsova, Elena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    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.
    Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study2022In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, article id 102Article in journal (Refereed)
    Abstract [en]

    Background: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending.

    Objective: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion.

    Methods: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities.

    Results: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.

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  • 13.
    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.

  • 14.
    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.

  • 15. Ferm Widlund, Kjerstin
    et al.
    Gunnarsson, Cecilia
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    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.
    Pregnant women are satisfied with the information they receive about prenatal diagnosis, but are their decisions well informed?2009In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 88, no 10, p. 1128-1132Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE. To survey the information about prenatal diagnosis that midwives give to pregnant women and to find out how the women experience the information. Furthermore, to evaluate the midwives' opinion about their knowledge and personal need for education. DESIGN. Descriptive cross-sectional study. SETTING. The southeast healthcare region of Sweden. METHODS. One hundred and fifty-seven midwives and 150 pregnant women were invited to reply to a confidential questionnaire in 2008. RESULTS. The reply rate was 78% for the midwives and 53% for the women. Ninety-six percentage of the midwives used < or =10 minutes to inform women about prenatal diagnosis. Seventy-two percentage always informed about the advantages and 41% about the choice to continue or terminate the pregnancy if a serious abnormality was detected. In addition, 41% considered that they had sufficient knowledge to inform about prenatal diagnosis, while 84% wanted additional education. Seventy-six percentage of the women took the decision to have prenatal diagnosis as soon as they found out that they were pregnant. A majority considered that they had been given enough time for questions and reflections. CONCLUSIONS. There was discrepancy between the amount of information, which midwives gave to pregnant women about prenatal diagnosis compared to what would be needed for a complete understanding of the relevant medical facts and the risks involved, but even so the women were satisfied with the information.

  • 16.
    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: The BMJ, E-ISSN 1756-1833, Vol. 343, p. d6901-Article in journal (Refereed)
  • 17.
    Frygner-Holm, Sara
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Åsenlöf: Physiotheraphy.
    Russ, Sandra
    Case Western Reserve University, Cleveland, OH, USA.
    Quitmann, Julia
    University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
    Ring, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women's and children's health), Clinical Psychology in Healthcare.
    Zyga, Olena
    Case Western Reserve University, Cleveland, OH, 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.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Neuropediatrics/Paediatric oncology.
    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.
    Pretend Play as an Intervention for Children With Cancer: A Feasibility Study2020In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 65-75Article in journal (Refereed)
    Abstract [en]

    Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.

  • 18.
    Garnier, Nicolas
    et al.
    Pfizer Inc, Collegeville, PA 19426 USA..
    Berghout, Joanne
    Pfizer Inc, Collegeville, PA 19426 USA..
    Zygmunt, Aldona
    Pfizer Inc, Collegeville, PA 19426 USA..
    Singh, Deependra
    Pfizer Inc, Collegeville, PA 19426 USA..
    Huang, Kui A.
    Pfizer Inc, Collegeville, PA 19426 USA..
    Kantz, Waltraud
    Pfizer Inc, Collegeville, PA 19426 USA..
    Blankart, Carl Rudolf
    Univ Bern, KPM Ctr Publ Management, Bern, Switzerland.;Univ Bern, Swiss Inst Translat & Entrepreneurial Med, Bern, Switzerland..
    Gillner, Sandra
    Univ Bern, KPM Ctr Publ Management, Bern, Switzerland.;Univ Bern, Swiss Inst Translat & Entrepreneurial Med, Bern, Switzerland..
    Zhao, Jiawei
    Univ Southern Denmark, Dept Math & Comp Sci, Odense, Denmark..
    Roettger, Richard
    Univ Southern Denmark, Dept Math & Comp Sci, Odense, Denmark..
    Saier, Christina
    Univ Freiburg, Fac Med, Med Ctr, Dept Neuropediat & Muscle Disorders, Freiburg, Germany..
    Kirschner, Jan
    Univ Freiburg, Fac Med, Med Ctr, Dept Neuropediat & Muscle Disorders, Freiburg, Germany..
    Schenk, Joern
    Takeda Pharmaceut Int AG, Opfikon, Switzerland..
    Atkins, Leon
    Takeda Pharmaceut Int AG, Opfikon, Switzerland..
    Ryan, Nuala
    Takeda Pharmaceut Int AG, Opfikon, Switzerland..
    Zarakowska, Kaja
    Takeda Pharmaceut Int AG, Opfikon, Switzerland..
    Zschuentzsch, Jana
    Univ Med Ctr Goettingen, Dept Neurol, Gottingen, Germany..
    Zuccolo, Michela
    F Hoffmann La Roche, Basel, Switzerland..
    Muellenborn, Matthias
    Novo Nordisk Hlth Care AG, Basel, Switzerland.;Novo Nordisk AS, Kloten, Denmark..
    Man, Yuen-Sum
    Novo Nordisk Hlth Care AG, Basel, Switzerland.;Novo Nordisk AS, Kloten, Denmark..
    Goodman, Liz
    Natl Univ Ireland, Univ Coll Dublin, Dublin, Ireland..
    Trad, Marie
    Lysogene, Neuilly Sur Seine, France..
    Chalandon, Anne Sophie
    Sanofi, Diegem, Belgium..
    Sansen, Stefaan
    Sanofi, Diegem, Belgium..
    Martinez-Fresno, Maria
    Illumina, Cambridge, England..
    Badger, Shirlene
    Illumina, Cambridge, England..
    Walther van Olden, Rudolf
    Novartis Gene Therapies Switzerland GmbH, Risch Rotkreuz, Switzerland..
    Rothmann, Robert
    Res Inst AG & Co KG, Digital Human Rights Ctr, Vienna, Austria..
    Lehner, Patrick
    Res Inst AG & Co KG, Digital Human Rights Ctr, Vienna, Austria..
    Tschohl, Christof
    Res Inst AG & Co KG, Digital Human Rights Ctr, Vienna, Austria..
    Baillon, Ludovic
    PTC Therapeut Switzerland GmbH, Steinhausen, Switzerland..
    Gumus, Gulcin
    EURORDIS, Paris, France..
    Gross, Edith
    EURORDIS, Paris, France..
    Stefanov, Rumen
    Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria.;Bulgarian Assoc Promot Educ & Sci, Inst Rare Dis, Plovdiv, Bulgaria..
    Iskrov, Georgi
    Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria.;Bulgarian Assoc Promot Educ & Sci, Inst Rare Dis, Plovdiv, Bulgaria..
    Raycheva, Ralitsa
    Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria.;Bulgarian Assoc Promot Educ & Sci, Inst Rare Dis, Plovdiv, Bulgaria..
    Kostadinov, Kostadin
    Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria.;Bulgarian Assoc Promot Educ & Sci, Inst Rare Dis, Plovdiv, Bulgaria..
    Mitova, Elena
    Bulgarian Assoc Promot Educ & Sci, Inst Rare Dis, Plovdiv, Bulgaria..
    Einhorn, Moshe
    Genoox, Tel Aviv, Israel..
    Einhorn, Yaron
    Genoox, Tel Aviv, Israel..
    Schepers, Josef
    Charite Univ Med Berlin, Berlin Inst Hlth, Berlin, Germany..
    Huebner, Miriam
    Charite Univ Med Berlin, Berlin Inst Hlth, Berlin, Germany..
    Alves, Frauke
    Max Planck Inst Multidisciplinary Sci, Translat Mol Imaging, Gottingen, Germany.;Univ Med Ctr, Clin Hematol & Med Oncol, Gottingen, Germany.;Univ Med Ctr, Inst Diagnost & Intervent Radiol, Gottingen, Germany..
    Iskandar, Rowan
    Swiss Inst Translat & Entrepreneurial Med Sitem I, Bern, Switzerland..
    Mayer, Rudolf
    SBA Res gGmbH, Vienna, Austria..
    Renieri, Alessandra
    Univ Siena, Med Genet, Siena, Italy..
    Piperkova, Aneta
    Bulgarian Assoc Personalized Med, Sofia, Bulgaria..
    Gut, Ivo
    CNAG, Barcelona, Spain..
    Beltran, Sergi
    CNAG, Barcelona, Spain..
    Matthiesen, Mads Emil
    FindZebra APS, Copenhagen, Denmark..
    Poetz, Marion
    Copenhagen Business Sch, Dept Strategy & Innovat, Copenhagen, Denmark..
    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.
    Trollmann, Regina
    Univ Erlangen Nurnberg, Erlangen, Germany..
    Agolini, Emanuele
    Bambino Gesu Children Hosp, IRCCS, Rome, Italy..
    Ottombrino, Silvia
    Bambino Gesu Children Hosp, IRCCS, Rome, Italy..
    Novelli, Antonio
    Bambino Gesu Children Hosp, IRCCS, Rome, Italy..
    Bertini, Enrico
    Bambino Gesu Children Hosp, IRCCS, Rome, Italy..
    Selvatici, Rita
    Univ Ferrara, Dept Med Sci, Med Genet, Ferrara, Italy..
    Farne, Marianna
    Univ Ferrara, Dept Med Sci, Med Genet, Ferrara, Italy..
    Fortunato, Fernanda
    Univ Ferrara, Dept Med Sci, Med Genet, Ferrara, Italy..
    Ferlini, Alessandra
    Univ Ferrara, Dept Med Sci, Med Genet, Ferrara, Italy..
    Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe2023In: PLOS ONE, E-ISSN 1932-6203, Vol. 18, no 11, article id e0293503Article in journal (Refereed)
    Abstract [en]

    Since 72% of rare diseases are genetic in origin and mostly paediatrics, genetic newborn screening represents a diagnostic "window of opportunity". Therefore, many gNBS initiatives started in different European countries. Screen4Care is a research project, which resulted of a joint effort between the European Union Commission and the European Federation of Pharmaceutical Industries and Associations. It focuses on genetic newborn screening and artificial intelligence-based tools which will be applied to a large European population of about 25.000 infants. The neonatal screening strategy will be based on targeted sequencing, while whole genome sequencing will be offered to all enrolled infants who may show early symptoms but have resulted negative at the targeted sequencing-based newborn screening. We will leverage artificial intelligence-based algorithms to identify patients using Electronic Health Records (EHR) and to build a repository "symptom checkers" for patients and healthcare providers. S4C will design an equitable, ethical, and sustainable framework for genetic newborn screening and new digital tools, corroborated by a large workout where legal, ethical, and social complexities will be addressed with the intent of making the framework highly and flexibly translatable into the diverse European health systems.

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  • 19.
    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.

  • 20.
    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.

  • 21.
    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.

  • 22.
    Grauman, Åsa
    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.
    James, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    Hauber, Brett
    Veldwijk, Jorien
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Communicating test results from a general health checkup: the public’s preferences from a discrete choice experiment survey2021In: Patient Related Outcome Measures, E-ISSN 1179-271X, Vol. 14, no 5, p. 649-660Article in journal (Refereed)
    Abstract [en]

    Background: Health checks can detect risk factors and initiate prevention of cardiovascular diseases but there is no consensus on how to communicate the results. The aim of this study was to investigate the preferences of the general population for communicating health check results.

    Methods: A randomly selected sample of the Swedish population aged 40–70 years completed a discrete choice experiment survey that included questions on sociodemographics, lifestyle and health and 15 choice questions consisting of six attributes (written results, notification method, consultation time, waiting time, lifestyle recommendation and cost). Data were analyzed with a latent class analysis (LCA). Relative importance of the attributes and predicted uptake for several scenarios were estimated.

    Results: In the analysis, 432 individuals were included (response rate 29.6%). A three-class LCA model best fit the data. Cost was the most important attribute in all classes. Preferences heterogeneity was found for the other attributes; in Class 1, receiving consultation time and the written results were important, respondents in Class 2 dominated on costs and respondents in Class 3 found consultation time, waiting time and lifestyle recommendations to be important. Health literate respondents were more likely to belong to Class 3. The predicted uptake rates ranged from 7 to 88% for different health checks with large differences across the classes.

    Conclusions: Cost was most important when deciding whether to participate in a health check. Although cost was the most important factor, it is not sufficient to offer health checks free-of-charge if other requirements regarding how the test results are communicated are not in place; participants need to be able to understand their results.

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  • 23.
    Grauman, Åsa
    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.
    James, Stefan K
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    Veldwijk, Jorien
    Erasmus Univ, Erasmus Choice Modelling Ctr, Rotterdam, Netherlands.
    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.
    Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment2019In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 102, no 8, p. 1528-1534Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this study was to explore research participants' (adults, age 50-65) perceptions of receiving cardiovascular risk information.

    METHODS: Five focus group interviews (N = 31) were performed with research participants aged 50-65 who participated in the Swedish CArdioPulmonary BioImage Study (SCAPIS). The interviews were analyzed using qualitative content analysis.

    RESULTS: The categories; the complexity of cardiovascular risk; insufficient presentation of test result; emotional responses; and health examinations provides confirmation, emerged. The test results were written in medical terms and lacked recommendations for further action which made it difficult for lay people to understand and use, and for some, also caused unnecessary worry.

    CONCLUSION: There was inadequate guidance concerning the implications of the test results, especially for participants without clinical findings. In order to allow research participants to obtain better cognitive and behavioral control, improvements are needed with regard to how personal risk information is communicated in research projects connected to health services.

    PRACTICAL IMPLICATIONS: The participants largely relied on physical signs when assessing their own cardiovascular risk. Health examinations are crucial for helping to add nuance to individuals' risk perceptions. For personal health information to have any real value for individuals, it must be designed from a user perspective.

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  • 24.
    Grauman, Åsa
    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.
    Nyholm, Dag
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    Jiltsova, Elena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Neurology.
    Widner, Håkan
    van Vliet, Trinette
    Drevin, Jennifer
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment2022In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 23, no 1, article id 138Article in journal (Refereed)
    Abstract [en]

    Background: The use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public's attitudes toward the use of ES cells for treatment of Parkinson's disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment.

    Methods: A randomly selected sample of the Swedish public, aged 18-87-years-old, completed an online survey (n = 467). The survey assessed socio-demographics, religious views, perceived moral status of the embryo, and attitudes toward using ES cells for medical treatment of PD and other diseases. Adjusted odds ratios (ORs) and 95% confidence intervals (CI) for positive vs. negative attitude toward using ES cells for drug development were computed using logistic regression.

    Results: The respondents were positive about using ES for treatment; specifically, 70% totally agreed that it is acceptable to use ES cells for treatment of PD, while 40% totally agreed that it is acceptable to use ES cells for treatment but induced pluripotent cells is just as efficient. Religion being of little importance in one's life was associated with a positive attitude toward using ES cells for treatment of PD (adjusted OR 6.39, 95% CI 2.78-14.71). The importance of being able "to access new, effective treatments against diseases that do not have any treatment available " was ranked as the most important factor to consider when using ES cells for drug development.

    Conclusion: Most respondents are positive about using ES cells for drug development, and making effective treatments accessible to those who do not have any. However, these attitudes are influenced by the specific disorder that the drug development is intended for, as well as the religious views and perceived moral status of the early embryo.

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  • 25.
    Grauman, Åsa
    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.
    Puranen, Arvid
    Sunderby Hospital, Region Norrbotten, Luleå, Sweden.
    James, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    Veldwijk, Jorien
    Erasmus School of Health Policy & Management, Erasmus University, Rotterdam, Netherlands, Erasmus Choice Modelling Centre, Erasmus University, Rotterdam, Netherlands.
    Short-term mental distress in research participants after receiving cardiovascular risk information2019In: PLOS ONE, E-ISSN 1932-6203, Vol. 14, no 5, article id e0217247Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Understanding of how cardiovascular risk information influence individuals is critical for the practice of risk assessment and the management of patients with cardiovascular disease.

    OBJECTIVES: The objective of this study was to investigate change in mental distress among research participants after undergoing a cardiovascular risk assessment and receiving individual test results.

    METHODS: In 2017, a questionnaire measuring mental distress after taking part in a risk assessment was distributed among 615 participants in the Swedish Cardiopulmonary Bio Image Study in Uppsala, Sweden, aged 50-64 years. Outcome measures were re-assessed after three months (30% were lost to follow-up).

    RESULTS: There were no differences in outcomes after three months for participants with normal test results or for participants who were referred to primary health care. Mental distress increased in participants who were referred to the hospital, and were further explained by the fact that these participants were diagnosed with coronary artery stenosis.

    CONCLUSIONS: CV risk information can be provided to individuals with lower levels of risk without concerns of inducing mental distress. However, in order to prevent unnecessary worry in contexts similar to this study, one should be prepared for different risk outcomes and plan for support for individuals with higher risk. The increased utility of powerful, yet not fully mature, imaging techniques requires careful considerations extending beyond medical risks and benefits; the clinician must also take into account the risk of mental distress and secure support when necessary.

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  • 26.
    Grauman, Åsa
    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.
    Veldwijk, Jorien
    James, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Cardiology.
    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.
    Byberg, Liisa
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Orthopaedics.
    Good general health and lack of family history influence the underestimation of cardiovascular risk: A cross sectional study2021In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 20, no 7, p. 676-683Article in journal (Refereed)
    Abstract [en]

    Aims Underestimation of cardiovascular risk may interfere with prevention of cardiovascular diseases (CVDs). We investigate whether general health and family history of myocardial infarction (MI) are associated with underestimation of perceived cardiovascular risk, and if the participants' calculated risk modifies that association.

    Methods and results The analysis sample consisted of 526 individuals, 50-64 years old, from a population-based cohort study. Information on general health (poor/fairly good, good, and very good/excellent), family history of MI, and self-perceived risk relative to others of similar age and sex were collected though a web-based survey. Participants were categorized into underestimation (n = 162, 31%), accurate estimation (n = 222, 42%), and overestimation (n = 142, 27%) of cardiovascular risk by comparing calculated Systematic Coronary Risk Estimation (SCORE) with self-perceived risk. Adjusted odds ratios (ORs) and 95% confidence intervals (CIs) for underestimation vs. accurate estimation of cardiovascular risk were computed using logistic regression (n = 384). Very good general health (OR 2.60, 95% CI 1.10-6.16) and lack of family history (OR 2.27, 95% CI 1.24-4.18) were associated with underestimation of cardiovascular risk. The associations were modified by the participants' calculated risk level; the association was stronger for high-risk individuals; without family history OR 22.57 (95% CI 6.17-82.54); with very good/excellent health OR 15.78 (95% CI 3.73-66.87).

    Conclusion A good general health and the lack of family CVD history can obscure the presence of other risk factors and lead to underestimation of cardiovascular risk, especially for high-risk individuals. It is, therefore, crucial to address the fact that the development of CV disease may be silent and multifactorial.

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  • 27.
    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)
  • 28.
    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)
  • 29.
    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)
  • 30.
    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)
  • 31.
    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)
  • 32.
    Hansson, M G
    Uppsala University.
    Introduction to discussion on ethical matters1998In: Acta Agriculture Scandinavica, Vol. suppl 29, p. 62-66Article in journal (Refereed)
  • 33.
    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)
  • 34.
    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)
  • 35.
    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)
  • 36.
    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.

  • 37.
    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)
  • 38.
    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.
    Biobanking Within the European Regulatory Framework: Opportunities and Obstacles2011In: Biopreservation and Biobanking, ISSN 1947-5535, E-ISSN 1947-5543, Vol. 9, no 2, p. 165-167Article in journal (Refereed)
    Abstract [en]

    A common feature of the European ethical and legal regulatory framework is that biobank-based research has a significant potential of providing new benefits to European citizens in terms of new medical treatment, and this research is therefore something that should be promoted. At the same time the legislatures are concerned, and rightly so, about the integrity of patients and healthy volunteers who provide samples and data. There is now ample evidence of how biobank-based research has provided great opportunities for new care. At the same time there are a growing number of reports about rash judgments about integrity by ethical review boards and data inspection authorities that are not in the best interest of patients. It is here argued that legislatures, ethical review boards, and data inspection authorities need to adopt a wider view of integrity and take into consideration the patients' interest in a sound scientific basis for medical diagnosis and treatment.

  • 39.
    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)
  • 40.
    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)
  • 41.
    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.
    Ethics and biobanks2009In: British Journal of Cancer, ISSN 0007-0920, E-ISSN 1532-1827, Vol. 100, no 1, p. 8-12Article, review/survey (Refereed)
    Abstract [en]

    Biobank research has been the focus of great interest of scholars and regulatory bodies who have addressed different ethical issues. On the basis of a review of the literature it may be concluded that, regarding some major themes in this discussion, a consensus seems to emerge on the international scene after the regular exchange of arguments in scientific journals. Broad or general consent is emerging as the generally preferred solution for biobank studies and straightforward instructions for coding will optimise privacy while facilitating research that may result in new methods for the prevention of disease and for medical treatment. The difficult question regarding the return of information to research subjects is the focus of the current research, but a helpful analysis of some of the issues at stake and concrete recommendations have recently been suggested.

  • 42.
    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.

  • 43.
    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)
  • 44.
    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)
  • 45.
    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.

  • 46.
    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)
  • 47.
    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)
  • 48.
    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. Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
    Bouder, Frederic
    Department of Technology and Society Studies, Maastricht, The Netherlands.
    Howard, Heidi C.
    Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
    Genetics and risk – an exploration of conceptual approaches to genetic risk2017In: Journal of Risk Research, ISSN 1366-9877, E-ISSN 1466-4461, Vol. 21, no 2, p. 101-108Article in journal (Refereed)
  • 49.
    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)
  • 50.
    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.
    Chadwick, R.
    Is medical ethics doing its job?: Introduction2011In: Journal of Internal Medicine, ISSN 0954-6820, E-ISSN 1365-2796, Vol. 269, no 4, p. 366-369Article in journal (Other academic)
123 1 - 50 of 135
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