Public quizzed on gene test kits

There is concern about genetic tests

The UK public is to be asked for its views on the availability of personal genetic tests.

The Human Genetics Commission is launching a three-month consultation exercise asking whether genetic tests should be sold direct to the public, or should only be available through a doctor.

There is a need for a statutory regulator to weigh up the predictive value of these tests

Helen Wallace

Technological developments mean genetic testing is easier and more readily available than ever before.

It could soon be possible for anyone to carry out genetic tests over the internet, without the involvement of a clinic.

They can be used to check for paternity, the risk of heart disease or to access diet and lifestyle advice.

Demand for the tests has been fuelled by growing public interest and understanding of medical information.

However, there is concern that there are currently no legal requirements about who can supply such tests and how the results are given.

The only form of regulation comes from general laws that protect consumers and their personal data, and from a voluntary Code of Practice with which companies are not obliged to comply.

The consultation document poses over 20 questions, including:

• whether genetic tests should be treated differently from other medical or health-related tests
• the possible role of professional groups such as pharmacists in the regulation or provision of genetic testing
• the possible control on genetic testing services via the Internet
• whether genetic testing services should be limited to adults capable of making informed consent
• whether test results should be included in GP's health records

Baroness Helena Kennedy QC, HGC chair, said: "A growing number of health-related tests are available directly from shops or over the internet, without the option of discussing the results and their possible implications with a doctor.

"Technological advances, coupled with the public's growing awareness of health-related issues, mean that 'high street' genetic testing is likely to increase.

"We want to examine the current framework and provide recommendations to ministers on whether new controls are necessary."

False reassurance

Helen Wallace, deputy director of the campaigning group GeneWatch UK, told BBC News Online that there was a risk that without expert advice people may be unnecessarily worried or falsely reassured by the results of genetic tests.

She said: "We do think that a doctor or genetic counsellor should be involved in any use of genetic tests.

"We also believe that there is a need for a statutory regulator to weigh up the predictive value of these tests, and to check the claims that are made for them."

The HGC will report to ministers by the end of the year.