Genetic Testing for Minors: Comparison between Italian and British Guidelines

Genetic testing in children raises many important ethical, legal, and social issues. One of the main concerns is the ethically inappropriate genetic testing of minors. Various European countries established professional guidelines which reflect the different countries perspectives regarding the main ethical issues involved. In this paper, we analyze the Italian and the British guidelines by highlighting differences and similarities. We discuss presymptomatic, predictive, and carrier testing because we consider them to be the more ethically problematic types of genetic testing in minors. In our opinion, national guidelines should take into account the different needs in clinical practice. At the same time, in the case of genetic testing the national and supranational protection of minors could be strengthened by approving guidelines based on a common framework of principles and values. We suggest that the Oviedo Convention could represent an example of such a common framework or, at least, it could lead to articulate it. 1. Introduction Genetic testing of minors raises many important ethical issues [1–4]. It can often generate information about future impairments in children’s health without helping physicians to establish diagnostic and/or therapeutic processes. First of all, we should consider the impact of genetic tests on the child: they may lead to stigmatization and they could change the day-to-day family’s life. Moreover, the child may also feel depressed or worried about the possible consequences of his/her genetic disorders, especially when it is not clear how they will affect their future [5, 6]. Another important issue concerns the child’s right not to know, by considering that minors have the right to participate in the medical decision-making process. In Article 12 of the United Nations “Convention on the Rights of the Child” we read that a “child who is capable of forming his or her own views [has] the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child” [7]. It is important to bear in mind that, in the case of genetic testing, as well as in the case of similar issues in medicine, the child’s privacy and confidentiality need to be respected [8–10]. In many countries, national guidelines have been developed. They address various aspects of childhood testing [1, 2, 11]. In our opinion, it could be interesting to question whether there are any national cultural factors or particular policies which could contribute to approach