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Views on data use, confidentiality and consent in a predictive screening involving children
Unit for Bioethics, Department of LIME, Karolinska Institutet,.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Pediatrics.
2008 (English)In: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 34, no 3, 206-209 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2008. Vol. 34, no 3, 206-209 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-42211DOI: 10.1136/jme.2006.020016PubMedID: 18316465Local ID: 61598OAI: diva2:263066
Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2012-07-11Bibliographically approved

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