The genetic testing of children: how to decide?. (360G-Wellcome-083059_Z_07_Z)

The Genetic Testing of Children: How To Decide? The issues raised by the predictive genetic testing of children and testing to identify healthy carriers of genetic disorders have been debated since ~1990 and were discussed at a meeting in London in 1996, sponsored by BMA Medical Ethics, GIG and Euroscreen (a research network) and supported by the Wellcome Trust. Rather than set up another debate grounded in the relevant principles, we wish to bring together families and professionals who have some experience of these issues in practice. In particular we wish to involve some non-specialist health professionals (i.e. those not working primarily in clinical genetics or genetic counselling) as well as some families and some genetics professionals. We wish to focus discussion on a small number of constructed but realistic scenarios, so that the experience of participants can contribute to the discussion without being caught up in details specific to just one or two groups. While carrier testing continues to raise a number of issues, e.g. in relation to newborn screening for sickle cell disease, perhaps the most significant area of change since the last meeting on this topic in 1996 has been in relation to predictive genetic testing where the test results may (or may not) lead to improved medical management for a child at risk of a serious inherited disorder. When does interest in a child's genetic status become clinically useful? - In what clinical contexts? With what family circumstances? And for which diseases? A meeting would need to hear the voices of (1) non-genetics health professionals (especially haematologists, paediatricians, cardiologists) as well as clinical geneticists and genetic counsellors, (2) families and support groups, (3) ethicists, social scientists and psychologists.