The Genetic Testing of Children

Univ. of Wales, Cardiff, UK. Examines the ethical and social issues raised by the genetic testing of children. Originated from a meeting organized by EUROSCREEN, the British Medical Association and the Genetics Interest Group, held in London in June 1996. For geneticists, clinicians, ethicists, and interested parents.

Angus Clarke studied Medical and Natural Sciences at King's College Cambridge, taking the part II course in Genetics in his final year. He then studied clinical medicine at Oxford for 3 years, qualifying in 1979, and worked in junior hospital posts for 2 years. He trained for 4 years in paediatrics, and then - seeking experience in research - he took a position in Medical Genetics with Peter Harper. This entailed visiting families from all over Britain with a rare condition called X-linked hypohidrotic ectodermal dysplasia. Many of these families reported ways in which social intolerance had added to their burden, and even health professionals had sometimes added to their problems instead of relieving them. Getting to know some of these families as personal friends has certainly influenced the direction of his work ever since. After 2 years' experience in Newcastle, working in both clinical genetics and paediatric neurology, he returned to Cardiff as a Senior Lecturer, now Reader, in Clinical Genetics. In drawing attention to the human problems potentially caused by genetic counselling or genetic screening programmes, Angus Clarke is anxious that medical genetics does not promise more than it can deliver - that it knows the limitations. His views have arisen from reflecting on the accounts of the experiences that have been described by families he has met, and are not determined by any particular theoretical position.