7 found
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  1.  34
    Building on Relationships of Trust in Biobank Research.M. G. Hansson - 2005 - Journal of Medical Ethics 31 (7):415-418.
    Trust among current and future patients is essential for the success of biobank research. The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on “genetic integrity” in Sweden, third parties will be prohibited from requesting or seeking (...)
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  2.  24
    Split Views Among Parents Regarding Children's Right to Decide About Participation in Research: A Questionnaire Survey.U. Swartling, G. Helgesson, M. G. Hansson & J. Ludvigsson - 2009 - Journal of Medical Ethics 35 (7):450-455.
    Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at (...)
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  3.  65
    Parental Authority, Research Interests and Children's Right to Decide in Medical Research – an Uneasy Tension?U. Swartling, G. Helgesson, M. G. Hansson & J. Ludvigsson - 2008 - Clinical Ethics 3 (2):69-74.
    There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden (with and without (...)
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  4.  43
    Cancellations of Elective Surgery May Cause an Inferior Postoperative Course: The 'Invisible Hand' of Health-Care Prioritization?H. Magnusson, L. Fellander-Tsai, M. G. Hansson & L. Ryd - 2011 - Clinical Ethics 6 (1):27-31.
    Elective surgery can be cancelled when resources are overwhelmed by emergency cases. We hypothesized that such cancellations, on psychological grounds, are followed also by inferior clinical results and we conducted a retrospective survey of patients following joint replacement surgery. Sixty patients having suffered from administrative cancellation prior to their operation during an 18-month period and with six months follow-up were identified and compared with another 60 matched patients after having the same type of surgery but without prior cancellation. All patients (...)
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  5.  41
    Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence.C. M. Hultman, A. -C. Lindgren, M. G. Hansson, J. Carlstedt-Duke, M. Ritzen, I. Persson & H. Kieler - 2009 - Public Health Ethics 2 (1):30-36.
    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 should one deal with informed consent for such a study? We designed a qualitative study with semi-structured telephone interviews. 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 (...)
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  6.  22
    What Parents Find Important When Participating in Longitudinal Studies: Results From a Questionnaire.G. Helgesson, M. G. Hansson, J. Ludvigsson & U. Swartling - 2010 - Clinical Ethics 5 (1):28-34.
    The objective of the present paper is to explore parents' views on safety and confidentiality, information and consent, the importance of different kinds of research, and their responsibilities regarding children's participation. A questionnaire was distributed to 2500 families in south-east Sweden with children born during the years 1997–1999; 1302 responded. The sample was chosen to include views of families with and without earlier research experience. A clear majority of responding parents stated that parents have a moral responsibility to let their (...)
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  7.  11
    Ethical Review Boards Are Poor Advocates for Patient Perspectives.M. Masterton, T. Renberg, M. G. Hansson & S. K. Sporrong - 2014 - Research Ethics 10 (3):169-181.
    In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards (ERB), as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the (...)
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