Informed consent and bio-banking of material from children
Genomics, Society and Policy 2005 February; 1(1): 16-26
This paper considers the ethical issues raised by biobanking of material from children who are not mature enough to give ethically valid consent. The first part considers consent requirements for entry of such materials in the biobank, whereas the second part looks at the issues that arise when a competent child later wants to withdraw previously stored materials, and at the issues that arise when there is informational entanglement between information about a parent and information about a child. The paper argues for three main conclusions: 1. That it is in most cases acceptable for parents to give proxy consent to entry of material from their children into biobanks, even though this is not strictly speaking in the best interest of the child; 2. that a right to withdraw from the biobank is more important when material has been entered with proxy consent; and 3. that disputes about the withdrawal of entangled information, i.e. information that is both about a parent and a child, should be resolved in favour of the child.
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Mapping the language of research-biobanks and health registries: from traditional biobanking to research biobanking. Solbakk, Jan Helge; Holm, Søren; Lobato de Faria, Paula; Harris, Jennifer; Cambon-Thomsen, Anne; Halvorsen, Marit; Stoltenberg, Camilla; Strand, Roger; Hofmann, Bjørn; Skrikerud, Anne Maria; Karlsen, Jan Reinert (2004)
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