Department of Health, Ethics and Society, Maastricht University, Maastricht, The Netherlands.
Am J Med Genet A. 2011 Aug;155A(8):1930-8. doi: 10.1002/ajmg.a.34107. Epub 2011 Jul 7.
Professional guidelines on genetic testing of children have recently shifted their focus from protecting the child's autonomous choice to professionals, together with parents, striving to work in the child's "best interest." This notion of "best interest" allows room for therapeutical as well as psychological and social considerations, and gives rise to the question how parents and professionals weigh up the child's best interest in practice. In this qualitative study, we followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 3½ years. In total 57 members of these families were interviewed in depth; many of them more than once. Our empirical analysis shows that the best interest of a child is constructed via long-term processes in the broader context of family and kin. In this context, "best interests" are considered and reconsidered. We conclude that a child's best interest should not be framed as the result of an instantaneous agreement between parents and professionals. In dealing with genetic testing of children, parents as well as professionals reflect on and learn from the processes of generating new meanings of "best interest." To enable professionals to deal with the variety in family life, these learning processes should be documented closely.
儿童基因检测的专业准则最近将关注点从保护儿童的自主选择转移到专业人员和父母共同努力，以符合儿童的“最佳利益”。“最佳利益”的概念为治疗、心理和社会因素留出了空间，并引发了一个问题，即父母和专业人员在实践中如何权衡儿童的最佳利益。在这项定性研究中，我们跟踪了荷兰六组参与肥厚型心肌病基因检测的扩展家庭，历时 3 年半。总共对这些家庭的 57 名成员进行了深入访谈；其中许多人不止一次接受了访谈。我们的实证分析表明，儿童的最佳利益是通过家庭和亲属更广泛背景下的长期过程构建的。在这种情况下，“最佳利益”是被考虑和重新考虑的。我们的结论是，儿童的最佳利益不应该被视为父母和专业人员之间瞬间达成一致的结果。在处理儿童基因检测时，父母和专业人员应该反思并从生成“最佳利益”新含义的过程中学习。为了使专业人员能够应对家庭生活的多样性，应该密切记录这些学习过程。
