Katholieke Universiteit Leuven, Centre for Biomedical Ethics and Law, Kapucijnenvoer 35/3 Box 7001, 3000 Leuven, Belgium.
J Med Ethics. 2011 Mar;37(3):179-83. doi: 10.1136/jme.2010.037473. Epub 2010 Nov 8.
The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant's autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher's primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.
个体遗传结果/偶然发现的回报问题与儿科生物库的结合在伦理文献中讨论得并不多。传统的赞成和反对回报此类发现的论点集中在尊重个人、自主权和团结等原则上。从遗传研究背景下个体结果回报的讨论中提炼出两个维度：参与者自主权的尊重和研究人员的责任。当涉及儿科生物库时，诸如自主权和团结等概念就不太容易适用于讨论。尽管父母可能被允许在储存的组织样本上进行最小风险的遗传研究中为孩子登记，但他们不应该选择不接受重要的健康信息。此外，儿童有权拥有开放的未来：父母无权访问生物库持有的任何关于其子女的遗传数据。在这方面，未成年人基因检测的准则是适用的。关于研究人员的责任，当研究对象是儿童时，研究人员是否有更严格的责任回报重要的健康信息，这个问题更难回答。研究人员的主要责任是进行有用的研究，返回个体结果的政策不能妨碍这项任务。考虑到弱势儿童的利益，在为特定的生物样本库或研究项目制定回报结果的政策时，这是一个需要考虑的额外因素。
