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HGC publishes consultation on direct-to-consumer genetic testing
8 September 2009
The availability of direct-to-consumer genetic tests has increased dramatically over the last ten years and needs to come under general guidelines, accepted internationally. The publication today (Tuesday 8 September) of a Consultation on a Common Framework of Principles for direct-to-consumer genetic testing services by the Human Genetics Commission represents an important step towards this.
Dr Frances Flinter, the HGC Commissioner who chaired the working group that developed the principles, said: “Direct-to-consumer tests covering everything from hereditary illnesses to ancestry research have multiplied significantly in recent years. Many of these tests are provided over the Internet by companies in the USA or Europe or over the counter in shops and pharmacies without advice from clinically trained professionals and with little in the way of regulation.
“Some tests can cause considerable surprise or concern to those taking them – or give false reassurance. Some, to say the least, are of doubtful value. We need a set of principles that can be adopted within existing legal frameworks in different countries.”
Dr Flinter explained: “We have produced the principles in conjunction with representatives from the genetic testing industry to promote high standards and consistency amongst commercial providers at an international level. They represent a high degree of consensus about what constitutes good practice. We have developed them with the interests of consumers at the front of our minds. They offer a guide to consumers, as well as service providers and regulators, about the elements that should make up a good quality direct genetic testing service. This consultation will give all those who have an interest in direct genetic testing the opportunity to influence the final version.”
The principles cover all aspects of direct-to-consumer genetic testing services including the marketing and advertising of tests, information for consumers, consent, the laboratory analysis of biological samples and the levels of support that should accompany the genetic test results.
• Purchasers of tests need to be aware of possible outcomes – what they might expect to find out and what they can do about it.
• Tests for serious hereditary diseases – like Huntington’s – should only be provided with “before and after” counselling.
• People requesting tests should be provided with simple easy to understand information on how genetic testing works and what the results mean.
• Companies should always make clear the limitations of the tests they provide and the relative roles of genetic makeup and lifestyle.
• Companies offering services must take steps to keep DNA samples and genetic information secure, and to ensure that they have the consent of the sample provider to perform the tests.
The consultation runs until 6 December 2009. Click here to download a copy of the consultation document.
Read more about the Common Framework of Principles for direct-to-consumer genetic testing services.
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