Many paediatric studies depend upon the collection and storage of biological material from children with the condition being investigated. A paper recently published in Nature examines the legal framework for such storage and finds a worrying lack of consistency.
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The study investigated the views of seventeen Dutch experts involved in paediatric biobanking. It focussed on informed consent for the donation of tissue as well as the disclosure of findings resulting from biobank research.
The results revealed no clear consensus about the appropriate procedures for storage of and research with children’s material in biobanks. Development of a framework that provides a fair balance between fundamental paediatric research and privacy protection is clearly needed.
ICH Good Clinical Practice rules have clearly-defined informed consent rules for children as well as rules ensuring patient confidentiality. Stored material is a potential source of personal information of the donor and their family that could theoretically lead to discrimination and interfere with a child’s future life chances.
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