ABSTRACT

Ethical aspects of genetic testing of children can be divided into three different sets of questions that are closely interrelated: general issues raised by diagnostic testing in childhood, issues raised specifically by genetic testing in childhood and the broader, social context of genetic testing. This chapter discusses the issues raised by a concrete example of genetic testing in childhood — screening infants for cystic fibrosis. In the context of predictive diagnostic tests carried out on currently healthy, so far unaffected individuals; such tests will often employ genetic techniques but some non-genetic tests may generate similar information. Diagnostic tests carried out for the sake of research are also difficult cases. They should certainly not be regarded as ethically acceptable if the testing procedure causes harm. Furthermore, the test has to be of some potential benefit to the child and the consent of the parents has to be obtained.