Swartling U, Helgesson G, Hansson M G, Ludvigsson J
Division of Paediatrics, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, SE-581 85 Linkoping, Sweden.
J Med Ethics. 2009 Jul;35(7):450-5. doi: 10.1136/jme.2008.027383.
Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.
基于大量问卷调查数据，本文聚焦于家长对儿童参与研究决定权的看法。数据来源于自1997年起参与一项纵向前瞻性筛查的4000个家庭。尽管当前的法规和建议强调儿童应对自身参与研究有影响力，但本研究中的许多家长并不认同。大多数家长（66%）支持向儿童提供有关研究相关方面的信息。然而，对于儿童在参与研究的某些阶段是否应被赋予决策权，做出回应的家长存在分歧：41.6%的家长表示反对或不确定。做出肯定回应的家长认为，儿童应被允许决定采血程序（70%），但在参与研究（48.5%）、样本分析（19.7%）和生物样本库存储（15.4%）方面的决定权则相对较小。那些认为儿童不应有权做出决定的受访者强烈强调，应尽可能让儿童继续参与研究，且儿童没有能力理解研究的后果。当被问及在儿科研究中他们认为最重要的利益是什么时，儿童自主权和决策权的排名最低。我们讨论了这些发现的意义。
