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Human Genetics Commission publish final report

7 June 2012
Appeared in BioNews 660

The Human Genetics Commission (HGC) has published its final report, which marks the end of its 12 years as an advisory body to the Government.

Following a review of arm's-length and non-departmental public bodies in October 2010, it was decided the HGC would be reconstituted as a Departmental Expert Committee.

The report makes recommendations to the new committee, announced in April this year as the Emerging Science and Bioethics Advisory Committee (ESBAC). While ESBAC will take on the responsibilities of the HGC, it also has a broader remit than human genetics.

Among the recommendations are that ESBAC establishes schemes to prevent genetic discrimination, and collaborates with the Government and the Association of British Insurers to find a long-term solution for the use of predictive genetic testing in insurance.

Further to this, the report authors hope ESBAC will continue to monitor intellectual property law and changes to UK policy related to genetics, as well as the mainstream media.

'The HGC has provided astute analyses of the social, ethical and legal aspects of developments in human genetic, alongside practical policy advice, for the past 12 years', says acting HGC chair Professor Sarah Cunningham-Burley. 'Its highly regarded reports, and the recommendations within them, will continue to have purchase in the years ahead as ESBAC tackles the implications of bioscience for health and healthcare'.

One such report, on direct-to-consumer genetic testing, is the 'Framework for Principles', published in August 2010, which set out standards that test providers should follow. The HGC recommend that ESBAC consider ways to monitor their implementation in the UK.

Professor Sir John Sulston, who was acting chair from 2007 until March 2012, says: 'One of the great strengths of the HGC was that it drew on an enormous diversity of views. The range of areas considered by the HGC over the course of its existence demonstrates how in one way or another, genetics now enters almost every aspect of our lives'.

Human Genetics Commission final report
HGC |  30 May 2012
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