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

Am J Med Genet A. 2009 Oct;149A(10):2346-58. doi: 10.1002/ajmg.a.33032.


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review
  • Systematic Review

MeSH terms

  • Confidentiality / ethics
  • Emotions / physiology
  • Genetic Research / ethics*
  • Harm Reduction
  • Humans
  • Informed Consent / ethics
  • Minors*
  • Ownership / ethics
  • Ownership / legislation & jurisprudence
  • Tissue Preservation / ethics
  • Tissue and Organ Harvesting / ethics*
  • Tissue and Organ Harvesting / legislation & jurisprudence