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Views on data use, confidentiality and consent in a predictive screening involving children

¹ Unit for Bioethics at the Department of LIME, Karolinska Institutet and Uppsala University, Uppsala, Sweden
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

Correspondence to:
G Helgesson, Unit for Bioethics, Department of LIME, Karolinska Institutet, Berzelius väg 3, SE-171 77 Stockholm, Sweden; gert.helgesson{at}ki.se

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.

Keywords: Children; concern; high-risk information; informed consent; longitudinal studies

This article has been cited by other articles:

				U. Swartling, G. Helgesson, M. G Hansson, and J. Ludvigsson Parental authority, research interests and children's right to decide in medical research - an uneasy tension? Clin Ethics, June 1, 2008; 3(2): 69 - 74. [Abstract] [Full Text] [PDF]