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Calls for legislation to prohibit genetic discrimination in the UK

24 September 2007
Appeared in BioNews 426

The UK's Human Genetics Commission (HGC) has called for the proposed Equality Bill to include measures to prohibit genetic discrimination both in the workplace and by the insurance industry. Speaking on behalf of the HGC, acting Chairman Sir John Sulston, said that such measures 'would be a landmark'. He added: 'It's something we've clearly needed for a while... The law is there to protect minorities. What is unacceptable and unfair is discrimination between one person and another based on their genetic differences - that should be the default'.

There is currently no legislation in place in the UK to protect people predisposed to a genetic condition from discrimination and, as it stands, the Government's Green Paper on the Bill does not include any such provisions. The Government maintains that there is no evidence of genetic discrimination at this time and therefore it would be unnecessary to legislate in this area. The HGC refuted this position, claiming that discrimination does indeed exist and is likely to rise as technologies that make use of genetic information develop. 'We should not wait until unfair practice arises. We know anecdotally there is evidence of discrimination and we should pre-empt it happening', Sir John argued, adding, that 'people are reticent to put it into law as they fear it would be interpreted in an adverse way but there is a strong case for having something there to protect individuals in the future'. Baroness Helena Kennedy QC, who last week resigned as Chair of the HGC, supported the statement, saying: 'It was similar with gender and race. These are the patterns. There is always denial with discrimination'.

The UK's insurance industry has agreed upon a voluntary moratorium on not taking into account results from predictive genetic testing until 2011 when deciding premiums, and employers may seek guidance from the Information Commissioner on issues regarding genetic information of employees, who has also issued a code of practice.

The HGC has been chaired by Baroness Kennedy since it was established in 1999. She announced her resignation on 12 September and Sir John will Chair the Commission until a new person is appointed. The Commission's purpose is to advise Government on the legal, social and ethical implications of genetic technologies.

Equality Bill seeks to ban genetic discrimination
The Daily Telegraph |  17 September 2007
Helena Kennedy Stands Down As Chair Of The Human Genetics Commission, UK
Medical News Today |  12 September 2007
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