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Ulrica Swartling [3]U. Swartling [3]
  1.  29
    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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  2.  9
    Views on data use, confidentiality and consent in a predictive screening involving children.G. Helgesson & U. Swartling - 2008 - Journal of Medical Ethics 34 (3):206-209.
    Data from the 5–6 year control questionnaire of the ABIS study, a Swedish prospective screening of children for Type 1 diabetes, indicates a genuine trust in the researchers—very few participating families expressed concern about their participation. Nevertheless, a majority do not want their research data to be used beyond the agreement of the original consent. They want to be asked for renewed consent in such cases. A vast majority also want potential high-risk information about their child to be communicated to (...)
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  3.  73
    Parental authority, research interests and children's right to decide in medical research – an uneasy tension?Ulrica Swartling, Gert Helgesson, Mats G. Hansson & Johnny 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.  14
    Self-assessed understanding as a tool for evaluating consent: reflections on a longitudinal study.U. Swartling & G. Helgesson - 2008 - Journal of Medical Ethics 34 (7):557-562.
    Based on extensive clinical questionnaire data, this paper explores the relation between research subjects’ self-assessed understanding and actual knowledge of a large-scale predictive screening study, and its implications for the proper handling of information and consent routines in longitudinal studies. The intitial data show that low self-assessed understanding among participants was correlated with limited knowledge, concern over participation and collected samples, less satisfaction with information, and feeling passive or negative towards the study. Among those reporting high understanding, a non-negligible number (...)
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  5.  23
    What parents find important when participating in longitudinal studies: results from a questionnaire.Gert Helgesson, Mats G. Hansson, Johnny Ludvigsson & Ulrica 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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  6.  4
    Parental authority, research interests and children's right to decide in medical research – an uneasy tension?Ulrica Swartling, Gert Helgesson, Mats G. Hansson & Johnny 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 we explored parents' (...)
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