Genetic screening services to be regulated

Genetic testing services are to be regulated to protect patients under a framework launched this week.

Genetic testing services will have to follow basic principles of consent and data protection (Photograph:SPL)
Genetic testing services will have to follow basic principles of consent and data protection (Photograph:SPL)

The regulations, published by the Human Genetics Commission, will mean companies selling genetic testing services must offer counselling with tests for serious hereditary conditions, such as breast cancer or Huntington’s disease.

They will also require companies to follow basic principles of consent, data protection, truth in marketing, scientific rigour and balanced interpretation.

Public Health minister Anne Milton said: ‘People deserve to have confidence that the tests they choose are evidence based and that they fully understand what the results mean.

‘These principles are a timely, appropriate and proportionate response to the growth in the direct-to-consumer genetic testing industry and I hope they bring much needed reassurance to patients.’

The market for these services is currently unregulated and there is concern that some tests may be imprecise and can raise unnecessary concerns or offer false hope to patients without clinical support.

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