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Informed Consent and the Bio-banking of Material from Children
Genomics, Society and Policy volume 1, Article number: 16 (2005)
Abstract
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 sored 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:
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1.
That it is in most cases acceptable for parents to give proxy consent to entry of material from their children ino biobanks, even though this is not strictly speaking in the best interest of the child;
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that a right to withdraw from the biobank is more important when material has been entered with proxy consent; and
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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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Open Access This is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License ( https://creativecommons.org/licenses/by-nc/2.0 ), which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
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Cite this article
Holm, S. Informed Consent and the Bio-banking of Material from Children. Life Sci Soc Policy 1, 16 (2005). https://doi.org/10.1186/1746-5354-1-1-16
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DOI: https://doi.org/10.1186/1746-5354-1-1-16
Keywords
- Proxy Consent
- D81D 81F5
- 81F5 G9D8
- 9C54 B978DD
- DB16693 D85I