Genetic research on stored tissue samples from minors: A systematic review of the ethical literature

The potential benefits of biobank research are well known. Also, the ethical implications of genetic research on stored tissue samples are well discussed in existing literature. The inclusion of tissue samples from minors may have significant scientific value. However, this inclusion raises specific...

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Bibliographic Details
Published in:American journal of medical genetics. Part A 2009-10, Vol.149A (10), p.2346-2358
Main Authors: Hens, Kristien, Nys, Herman, Cassiman, Jean-Jacques, Dierickx, Kris
Format: Article
Language:English
Subjects:
benefit
biobank
biological sample
Confidentiality - ethics
consent
Emotions - physiology
ethics
genetic research
Genetic Research - ethics
Harm Reduction
Humans
Informed Consent - ethics
literature review
minimal risk
minor
Minors
Ownership - ethics
Ownership - legislation & jurisprudence
Tissue and Organ Harvesting - ethics
Tissue and Organ Harvesting - legislation & jurisprudence
Tissue Preservation - ethics
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Summary:The potential benefits of biobank research are well known. Also, the ethical implications of genetic research on stored tissue samples are well discussed in existing literature. The inclusion of tissue samples from minors may have significant scientific value. However, this inclusion raises specific ethical questions. We have performed a systematic search of the literature and found 21 theoretical and empirical articles dealing with the issue. After review, we distilled five clusters of themes: consent, risks, benefits, return of results, and ownership. We have described the different components of these themes, as they occurred in the literature and have provided a discourse on the topic. © 2009 Wiley‐Liss, Inc.
ISSN:1552-4825
1552-4833
DOI:10.1002/ajmg.a.33032