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Inappropriate genetic testing of children
  1. Department of Clinical Genetics
  2. Royal Liverpool Children's Hospital, Alder Hey
  3. Eaton Road, Liverpool L12 2AP, UK

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In 1994, a working party of the UK Clinical Genetics Society produced a report on the genetic testing of children following a survey of practice and attitudes, largely among professionals in the UK,1 and the findings were summarised in an annotation in this journal.2 In response to this report, the British Paediatric Association issued a statement to members in March 1996 which referred specifically to testing children for adult onset disease. This statement recommended that it was appropriate to perform predictive testing if the onset of the condition regularly occurs in childhood or if there was a useful medical intervention that can be offered (for example, testing a 9 year old for familial adenomatous polyposis). It declared that it was inappropriate to test for untreatable adult onset diseases (for example, Huntington's disease) when formal genetic testing should wait until the “children” were old enough to request testing for themselves.

A subsequent survey of professionals in 37 countries by Wertz3 revealed that the majority of geneticists in northern/western Europe, the USA, and other English speaking countries would refuse testing for adult onset diseases but in Asia, Latin America, and southern/eastern Europe, the majority of geneticists would accede to parental requests.

A new survey of current attitudes and practice in the UK has been commissioned by the Advisory Committee on Genetic Testing and the Department of Health, and some early results have been presented.4 A questionnaire was sent to 2040 consultants in paediatrics, genetics, and paediatric surgery and 144 genetic nurses and counsellors. A total of 692 completed responses were received. The response rate by specialty was 32% for paediatricians, 66% for geneticists, 28% for surgeons, and 18% for nurses/counsellors. Respondents were asked about tests performed on children under 14 years of age in 1997–98. These tests included …

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