Hens Kristien, Nys Herman, Cassiman Jean-Jacques, Dierickx Kris
Katholieke Universiteit Leuven, Centre for Biomedical Ethics and Law, Leuven, Belgium.
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.
生物样本库研究的潜在益处是众所周知的。此外,现有文献中也对利用储存的组织样本进行基因研究的伦理问题进行了充分讨论。纳入未成年人的组织样本可能具有重大的科学价值。然而,这种纳入引发了特定的伦理问题。我们对文献进行了系统检索,发现了21篇涉及该问题的理论和实证文章。经过审查,我们提炼出了五个主题类别:同意、风险、益处、结果反馈和所有权。我们描述了这些主题在文献中出现的不同组成部分,并就该主题进行了论述。