skip to page contents

News

HGC calls for regulation of direct-to-public tests

4 December 2007

Britain could be on the verge of an explosion of genetic tests sold directly to the public.  Yet there are virtually no independent checks on the tests before they are put on sale and it is notoriously difficult to regulate the claims made for them by test providers. In the wrong circumstances, many could even do more harm than good. 

These are the conclusions of the report "More Genes Direct" from the Human Genetics Commission (HGC) published today (Tuesday). 

Sir John Sulston, who chairs the HGC, said: "There is no doubt that many tests  provided without the involvement of a doctor or a health professional could cause people totally unnecessary alarm or give them false reassurance. We have a burgeoning industry here and we urgently need regulation to match."  

The Commission is calling for much tougher approval mechanisms, agreed codes of conduct and an end to direct advertising to the public for tests and services with significant health implications.  Companies providing tests should be made to prove that they are based on good scientific evidence.  

Dr Christine Patch, one of the authors of the report, said: "The HGC is against an outright ban on genetic tests sold directly to the public but people need to be aware of what they are buying. My simple advice to the public is that, with many of the tests currently on the market, you are wasting your money. At the moment the science is not strong enough to be offering tests of multiple genes."     

The Commission’s main recommendations are: 

  • A review of the European Directive which deals with genetic tests to get rid of existing loopholes which exempt them from thorough pre-market evaluation.
  • An end to advertising directly to the public for tests with significant health implications.
  • A  new system of regulation for non-medical "lifestyle" tests which fall outside the European Directive.

The Commission intends to hold talks with test providers, regulators and others early in 2008 to consider the present system for marketing genetic tests.

A copy of the full report is available here.   

4 December 2007


Note to Editors 

"More Genes Direct" follows a review of developments since "Genes Direct", the HGC’s first review of genetic tests offered directly to the public, which was published in 2003.  

Full list of News Items

Other news