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HGC publishes new report on direct-to-consumer genetic testing

9 August 2010
Appeared in BioNews 570

The Human Genome Commission (HGC) has published a new ‘Common Framework of Principles’ for direct-to-consumer (DTC) genetic tests on 4 August.

The HGC states that ‘The market in direct-to-consumer genetic testing has grown significantly over recent years’ and there is a ‘need to develop high level principles for direct-to-consumer genetic tests’.

The organisation has created 13 principles that cover issues relating to the marketing and advertising of tests, consumer information, regulatory information, and laboratory standards. Further issues covered by the principles include counselling and support for consumers, data protection, sample handling, and consent.

The HGC hopes that ‘The Principles will promote high standards and consistency in the provision of genetic tests amongst commercial providers at an international level’.

The principles were put together by an expert group that met in London in June 2008, who agreed that common guidelines were needed. This resulted in a consultation draft in 2009, and a final draft being published in summer 2010.

This ‘working group’ consisted of 11 members, which included Dr Frances Flinter, a clinical geneticist from Guy’s and St Thomas’ Hospital in London, Mr Alastair Kent from Genetic Alliance UK, and Dr Ron Zimmern from the Foundation for Genomics and Population Health. 

The HGC is a UK government advisory body that reports on genetic developments and their ethical, legal, social and economic implications.       

The release of the principles follows a highly critical report by the US government, which found that DTC genetic tests in the US were often misleading and inaccurate.

A Common Framework of Principles for direct-to-consumer genetic testing services
Human Genetics Commission |  4 August 2010
Call to regulate do-it-yourself genetic testing kits rejected
The Independent |  4 August 2010
DNA tests may threaten your child’s rights
The Times |  4 August 2010
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