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Genetic research on stored tissue samples from minors: A systematic review of the ethical literature
Author(s) -
Hens Kristien,
Nys Herman,
Cassiman JeanJacques,
Dierickx Kris
Publication year - 2009
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.33032
Subject(s) - inclusion (mineral) , biobank , value (mathematics) , informed consent , ethical issues , systematic review , empirical research , research ethics , engineering ethics , psychology , biology , medline , epistemology , political science , social psychology , microbiology and biotechnology , medicine , alternative medicine , genetics , pathology , law , computer science , philosophy , engineering , machine learning
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.