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HGC public consultation on DTC genetic testing services
The UK Human Genetics Commission (HGC) has launched a public consultation on its draft document A Common Framework of Principles for direct-to-consumer genetic testing services. This follows on from their earlier reports on genetic tests supplied to the public, Genes Direct published in 2003 and More Genes Direct published in 2007.
The Common Framework of Principles is intended to “promote high standards and consistency in the provision of direct-to-consumer genetic tests amongst commercial providers at an international level, in order to protect the interests of people seeking genetic tests and their families”. Companies and governments may use these principles as a guide to good practice or for developing Codes of Conduct or other regulatory responses. This approach stands in a stark contrast to the paternalistic German legislation regulating to genetic testing, in which DTC genetic tests are essentially banned (see previous news).
The Principles were developed by an expert working group, including Dr Ron Zimmern from the PHG Foundation as well as clinicians, laboratory scientists, genetic counsellors and representatives from both patient groups and commercial genetic testing providers. The Principles are intended to cover all types of genetic tests sold or marketed to the public, including diagnostic, pre-symptomatic, carrier, pharmacogenetic, susceptibility, lifestyle / behavioural, nutrigenetic, phenotypic, relatedness (e.g. paternity), ancestry and genetic matching. Recommendations are made relating to the marketing, advertising and regulation of genetic tests, information provision, consent and data protection, sample handling and laboratory processes, interpretation of the results, availability of continuing support, and complaints procedures.
The draft is accompanied by a set of consultation questions. Of particular note are questions addressing the need for pre- and post-test genetic counselling, the usefulness of drawing a distinction between presymptomatic and susceptibility tests, and whether children (or those lacking the capacity to give informed consent) should be able to purchase tests.
The consultation period closes on 6 December 2009, and the PHG Foundation will be submitting a formal response in due course.