New standards of best practice will be drawn up in the UK to try and control the boom of unregulated genetic tests now being marketed to the public via the internet, says Christine Patch, Genetic Counsellor at Guys and St Thomas' Hospital and Human Genetics Commission (HGC) member. A consultation process involving individuals from industry, government, public bodies, charities and other stakeholder groups is already underway to try and flesh out the new guidelines and determine how best they should be implemented and policed, she told delegates of the British Society for Human Genetics annual conference today.
Patch said: 'The need for clear standards of practice is widely recognised and largely welcomed by industry and other stakeholder groups. What is not yet agreed is who should develop and oversee such guidelines and whether they should be written into European law or limited to the UK.'
Patch continued: 'When families access genetic testing through the NHS, they receive pre- and post- test counselling to make sure that they understanding the full implications of the test, both for themselves and other family members, and also the meaning of the results, which may subsequently inform important lifestyle or reproductive decisions. But when accessed without specialist medical support, such tests have the potential to be misinterpreted by the patient or even GP, causing unnecessary anxiety and potentially leading to mis-informed decision making.'
With so many unverified tests now on the market - claiming to assess an individual's risk of everything from breast cancer to ability to taste brussel sprouts - there is a real danger that the public may lose faith in genetic testing completely, believes Patch. 'If the promise of genomics to improve health is to be realised without causing harm or loss of public trust, developments in the evaluation and control of supply of tests may be as important as the science itself,' she said.
Over recent years, consumer's ability to obtain laboratory tests directly and without medical advice has been increasing, sparking concerns over the scientific validity of such tests and their potential to be misleading if interpreted by someone without specialist training. The HGC first recommended that there should be greater oversight of genetic testing in 2003, when only a few service providers were marketing tests direct to the public. But the recent surge in such tests means that the need for standards of best practice to protect public health is now very urgent, says Patch, who advises families at high risk of a genetic condition.
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