Genetic home-testing kits 'need strict monitoring'

The misuse of genetic information and the testing of a person's DNA without their consent should be outlawed, government advisers believe.

The misuse of genetic information and the testing of a person's DNA without their consent should be outlawed, government advisers believe.

A report by the Human Genetics Commission said the advent of home-testing kits for genetic predispositions had triggered concerns about the abuse of personal medical information.

Baroness Kennedy of the Shaws, who chairs the commission, said she did not want home-testing to be made illegal. But she said she would like better protection for vulnerable people before testing became more widespread.

"We do not see a need for an outright ban as people have the right to information about themselves. But we do want people to be properly protected," she said. "One area that keeps coming up is this issue of people accessing genetic information without consent."

The commission consulted the public, doctors and commercial organisations in assessing the ethical issues surrounding the introduction of simple tests for genetic traits.

The tests, which are not expensive, were made possible by the deciphering of the human genome. Among other things, they can discover whether someone is a carrier of the cystic fibrosis gene or whether they have inherited a predisposition for a debilitating illness in later life, such as heart disease.

Philip Webb, a DNA scientist who chaired the commission's working party on genetic testing, said the sale of over-the-counter testing kits needed to be more rigorously controlled. He said "surreptitious" testing should be classed as a specific offence.

"At the present time we feel that [control] is rather lax and that anybody can set up a genetic testing service, advertise pretty freely and offer it to anybody they wish. We feel strongly that there should be a fully funded NHS genetics service that manages and allows access to new genetic tests that come along.

"We are concerned that direct genetic tests could open up the possibility that samples taken at home and sent to a lab may not be from the people they are said to be from, or there could be an issue of taking samples from children without parental consent. So we think the Government [should] ... introduce this new offence before we would be happy [to say] that home sampling is something we would want to see. But these are very early days for direct genetic tests and no one can say for sure what sort of tests will be offered to people in the future."

The commission is concerned that companies may overstate the role of genetics in triggering a disease in an attempt to boost sales.

It also fears that some people may end up either failing to seek proper medical advice or taking treatments that are not strictly necessary after receiving their results.

One area of concern that will be addressed in a future report is the misuse of paternity testing.