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Views on data use, confidentiality and consent in a predictive screening involving children
  1. G Helgesson1,
  2. U Swartling2
  1. 1
    Unit for Bioethics at the Department of LIME, Karolinska Institutet and Uppsala University, Uppsala, Sweden
  2. 2
    The ABIS Research Group, Division of Paediatrics and Diabetes Research Centre, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Linköping, Sweden
  1. G Helgesson, Unit for Bioethics, Department of LIME, Karolinska Institutet, Berzelius väg 3, SE-171 77 Stockholm, Sweden; gert.helgesson{at}


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 them. Most participating families want this regardless of whether any preventive treatment is available. Although potential benefits for their child is a motivation for participation for a majority of the respondents, they also claim to be motivated by altruistic reasons. These results are compared to results from two similar studies in the UK.

  • Children
  • concern
  • high-risk information
  • informed consent
  • longitudinal studies

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  • Competing interests: None.

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