'DIY genetics tests' guidelines published

By Michelle Roberts
Health reporter, BBC News

Image caption,
A cheek swab provides the DNA needed for the test

Experts concerned about the availability of DIY genetic tests have launched guidelines for the industry.

A growing number of private companies offer direct-to-consumer tests that estimate a person's risk of diseases such as cancer, based on their genes.

The Human Genetics Commission is concerned people are buying kits online without counselling or enough information to interpret the results.

This can leave some falsely reassured or unduly worried, it says.

The bulk of the tests available are offered by US companies but can be bought via the internet in any country.

Individuals send off a cheek swab for lab analysis that will tell them their likelihood of developing a number of conditions such as heart disease, diabetes, Alzheimer's, Huntington's or breast cancer.

The industry is largely unregulated, and the HGC says this can mean patients are given potentially distressing information without clinical support.

Guiding principles

The HGC says tests for serious hereditary diseases - like Huntington's and breast cancer - should only be provided with the offer of counselling both before and after testing.

And companies must make clear what the possible outcomes of taking a test are, and what patients can do about them.

Patients should also be provided with simple information on how genetic testing works.

And any claims made about tests should be supported by evidence which is published in scientific journals, says the HGC.

The guidelines are not mandatory, but the HGC is hopeful that they will have the desired effect and say, for now, they are a better option than laws or regulation.

HGC chairman Dr Jonathan Montgomery, who helped draw up the guidelines, said they had settled on a set of 'off the shelf' principles that could be used everywhere.

"It's a bit like a kite mark for the industry.

"There is more to be gained from codifying good practice than pushing for regulation or legislation."

Not tough enough

But some say stricter rules are needed.

The Patients Association said: "Such guidelines are important and while we applaud the efforts being made to protect vulnerable patients, we have serious concerns that some patients may fall through the net of self-regulation and become victims of unscrupulous providers.

"Patients should always consult a healthcare professional before embarking on such purchases to ensure they have access to the full services that they may need."

Peter Vicary-Smith, chief executive of the consumer group Which?, said: "This set of principles from the HGC is a positive first step to address those risks in the absence of formal regulations, but we do feel they could go further.

"For example, tests for serious hereditary diseases should only be provided through medical professionals."

Public health minister Anne Milton applauded the HGC for "showing much-needed leadership in cracking down on this".

"People deserve to have confidence that the tests they choose are evidence based and that they fully understand what the results mean," she said.

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