This SGPPH sponsored event took place at BMA House on 6 July 2007.

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The SGPPH joined other interested organisations in sponsoring a meeting held at the BMA on 6 July 2007 on the genetic testing of children. The aim of the meeting was to revisit guidelines developed by the Clinical Genetics Society in 1994. At that time, there was considerable variation in the use of genetic testing in children, and the ethical basis for testing had not been well developed. A Clinical Genetics Society working party, led by Dr Angus Clarke, aimed to identify the particular ethical concerns raised by genetic testing of children and to assess current practice and attitudes in Britain. They circulated a questionnaire circulated to around 3000 health professionals, which revealed that two areas were potentially problematic - the predictive testing of apparently healthy children for an adult-onset disorder, and the testing of healthy children to determine their carrier status for inherited disorders (such as sex-linked or recessive disorders).

The resulting guidance concluded that in the absence of childhood onset or the availability of medical interventions, that predictive testing for an adult-onset disorder should not be offered; nor should carrier testing, where the aim of the test is purely to promote the child’s future reproductive choice. In other situations, arguments against testing may be more finely balanced, particularly where the context indicates a potential benefit to other family members.

How has the debate progressed over the last decade? Clinicians generally seem more sympathetic to retaining a child’s autonomous choice and delaying testing wherever possible. Research presented at the meeting by Professor Kris Dierickx revealed significant variations between European countries, with Southern and Eastern European countries being more likely to carry out carrier testing at the request of a parent than Northern and Western European ones. Within Northern and Western Europe there were also variations – with the UK tending to test a minor two years earlier than in Germany or France, suggestive that the UK Gillick case promotes a competence based assessment. The consensus from the meeting was that imposing a strict age limit for genetic testing (as in Australia) is generally inappropriate particularly given that empirical evidence from Australia tends to support the testing of young adults for Huntingdon’s disease (presented by Dr Rony Duncan from Australia).

Despite calls in 1994 for prospective and retrospective psychosocial research on the genetic testing of children, the consensus from the meeting was that evidence remained sketchy and that more research is urgently needed. The 1994 guidance identified genetic testing of children undergoing adoption as a potential ‘special case’ for testing. It was generally felt that these special justifications were less clear cut than they had been in the 1990’s. Those attending the meeting felt that many of the difficulties encountered in the context of adoption could be addressed by better education of professionals involved and more understanding of institutionalised cultural differences between agencies.