16 June 2009
The European Society of Human Genetics (ESHG) has issued draft recommendations for the regulation of genetic testing for common complex disorders, and is seeking comment from ‘the human genetics community’. The document notes the scope for improved diagnosis, prognosis, management and prevention for common disorders based on emerging genomic knowledge, but contrasts it with the slow delivery of tangible benefits. The dangers of premature and over-hyped genetic susceptibility tests offered direct-to-consumers in potentially undermining public trust in genetic testing for medical purposes are also noted.
The draft recommendations cover issues surrounding the assessment and regulation of genetic susceptibility testing and screening, and harmonisation of such processes across Europe, as well as various related ethical, legal and social issues. The proposals have been developed by the ESHG Public and Professional Policy Committee, EuroGentest, and the Institute for Prospective Technological Studies, part of the EC Joint Research Centre. They are open for comment until 1st July 2009; a background document is also available.
The regulation and evaluation of genetic testing is an area of active work for the PHG Foundation, and a formal response to the ESHG consultation will be available shortly.