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Views on data use, ...
Views on data use, confidentiality and consent in a predictive screening involving children
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- Helgesson, Gert (författare)
- Karolinska Institutet
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- Swartling, Ulrica, 1965- (författare)
- Linköpings universitet,Hälsouniversitetet,Pediatrik
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(creator_code:org_t)
- BMJ, 2008
- 2008
- Engelska.
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Ingår i: Journal of Medical Ethics. - : BMJ. - 0306-6800 .- 1473-4257. ; 34:3, s. 206-209
- Relaterad länk:
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https://urn.kb.se/re...
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visa fler...
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https://doi.org/10.1...
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http://kipublication...
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Abstract
Ämnesord
Stäng
- 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.
Nyckelord
- MEDICINE
- MEDICIN
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)
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