Genetic testing of Children: Updating national guidelines. (360G-Wellcome-088581_Z_09_Z)

This meeting, which will be facilitated by the Genethics Club, will develop a proposal for updating professional guidelines on the genetic testing of children. A background scoping meeting in June 2007 sought professional and lay opinions and identified some key areas where the 1994 guidance is out of date. Genetic services and the number of genetic tests have increased substantially over the past fourteen years and genetic testing has spread outside the confines of the small speciality of clinical genetics. For example, national neonatal screening programmes, oncology and haematology are now increasingly involved with genetic testing and there is a need for clear guidance for practitioners faced with requests from parents. At the same time, research into childhood genetic testing has been extremely limited, in part because professional guidelines suggested it should not take place. We therefore plan to hold a one day meeting of key individuals to discuss the development and implementation of new guidelines taking these developments into account. Integral to the guidance revision is the identification of key avenues for future research and the development of collaborations with clinical services on a national level to facilitate its implementation.