Centre for Biomedical Ethics and Law, Department of Public Health, Katholieke Universiteit Leuven, Leuven, Belgium.
Eur J Hum Genet. 2011 Jul;19(7):735-9. doi: 10.1038/ejhg.2011.29. Epub 2011 Mar 9.
The use of stored tissue samples from children for genetic research raises specific ethical questions that are not all analogous to those raised when adult participants are concerned. These include issues with regard to consent, as it is typically a parent who consents to the use of samples from children. In this paper, we discuss the scope of parental consent. This scope has a temporal dimension and one related to the content of consent. It is not questioned that the temporal scope of parental consent is limited and that young adults have the right to decide on the fate of their samples when they reach the age of maturity. With regard to the content of consent, the question remains whether parents are allowed to give full broad consent to any possible future research on the samples of their children. We argue that they should not be allowed to do so, based on two premises. First, it is generally acknowledged that children have a right to express their own values and that they should be given the opportunity to develop their own autonomy as they grow older. Second, research and science are not completely value-free and some types of research may be more sensitive than other types. Children should be given the opportunity to express their values also in this respect.
利用儿童储存的组织样本进行遗传研究引发了一些特定的伦理问题，这些问题与涉及成年参与者的问题并不完全类似。其中包括同意的问题，因为通常是父母同意使用儿童的样本。在本文中，我们讨论了父母同意的范围。这个范围具有时间维度和与同意内容相关的维度。父母同意的时间范围是有限的，当年轻人达到成年年龄时，有权决定他们样本的命运，这一点是毋庸置疑的。至于同意的内容，问题仍然是父母是否被允许对其子女样本的任何未来研究给予全面的同意。我们认为，不应该允许他们这样做，这基于两个前提。首先，人们普遍承认，儿童有权表达自己的价值观，并且应该随着年龄的增长有机会发展自己的自主权。其次，研究和科学并非完全没有价值，某些类型的研究可能比其他类型更为敏感。儿童也应该有机会在这方面表达他们的价值观。
