Views on data use, confidentiality and consent in a predictive screening involving children.
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.
Helgesson
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G
Unit for Bioethics, Department of LIME, Karolinska Institutet, Berzelius väg 3, SE-171 77 Stockholm, Sweden. gert.helgesson@ki.se
Swartling
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U
D002648:Child; D002675:Child, Preschool; D003219:Confidentiality / Q000941:ethics*; D003922:Diabetes Mellitus, Type 1 / Q000517:prevention & control*; D030881:Disclosure / Q000941:ethics*; D005190:Family; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007258:Informed Consent / Q000941:ethics*; D008137:Longitudinal Studies; D008403:Mass Screening / Q000941:ethics*; D035842:Research Subjects; D011795:Surveys and Questionnaires; D013548:Sweden