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HGC publishes guidelines to protect people using DIY genetic tests

Published on August 5, 2010 at 4:05 AM · No Comments

Cancer News

New guidelines for direct-to-consumer genetic tests

Wednesday 4 August 2010

A set of guidelines has been published to protect people using DIY genetic tests for inherited diseases, such as certain types of breast cancer.

The guidelines have been drawn up by the Human Genetics Commission (HGC), which hopes to provide the public with greater confidence in genetic testing kits.

Companies - many of which are based in the US - have started to sell DIY testing kits over the internet, providing users with an estimate of their risk of inheriting diseases.

However, the market is currently unregulated and experts are concerned that people can be caused unnecessary concern about their future health without receiving proper counselling.

Under the new industry guidelines, companies will be expected to offer counselling both before and after someone takes a test for serious hereditary diseases, including breast cancer.

They should also explain the possible outcomes of taking a DIY test and provide simple information on how the test works.

Companies will also only be able to make claims that are supported by evidence published in scientific journals.

HGC commissioner Dr Frances Flinter commented: "Direct-to-consumer tests covering everything from hereditary illnesses to ancestry research are now available over the internet from companies in the USA and Europe.

"Some tests can cause considerable surprise or concern to those taking them - or give false reassurance. Some are of doubtful value, to say the least. To cover this international market we need a set of 'off the shelf' principles that can be used everywhere."

Public health minister Anne Milton welcomed the new set of principles, noting that people "deserve to have confidence that the tests they choose are evidence-based and that they fully understand what the results mean".

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