Baroness Helena Kennedy has announced that she is stepping down after eight years as Chair of the UK's Human Genetics Commission (HGC). She made the announcement at the Commission's plenary meeting in Durham earlier this month. The Commission's Vice-Chair, Sir John Sulston, will take over as acting chair pending the appointment of a successor.
Announcing her departure, Baroness Kennedy said: 'It has been a huge privilege to be in at the beginning of the Commission's work and to help establish the ground rules. The HGC has been pioneering in the way it has conducted its business and engaged with the public. I think we can proudly say that we have created a template for how public bodies should operate. I have worked with some wonderful people and it has been an inspirational experience for me personally'.
She said one of the HGC's greatest achievements since it was set up in 1999 was to campaign against the misuse of genetic material and, in particular, media intrusion. She was proud that the Commission had persuaded the Government to make the testing of a person's DNA without consent a criminal offence.
As the Government prepares to consolidate anti-discrimination legislation in a new Single Equality Bill, the Commission agreed to make a strong recommendation that such a Bill should include measures to outlaw unfair discrimination based on genetic difference. Commissioners were persuaded that a prohibition was necessary to ensure that individuals could take medically relevant genetic tests, access services and participate in potentially beneficial research without fear of being disadvantaged, either now or in the future.
Sir John Sulston said, 'We should not wait until unfair practice arises. We know anecdotally that there is evidence of discrimination and we should pre-empt it happening'. Baroness Kennedy said discrimination was currently the biggest issue facing human genetics. She said attitudes towards it were following the pattern of discrimination in other areas. 'It was similar with gender and race. These are the patterns. There is always denial with discrimination', she said.
At the Durham meeting, Commissioners also discussed the police National DNA Database - now the largest in the world. In the light of calls for expansion of the database to cover all UK residents and visitors, Baroness Kennedy said: 'I think the idea of a national database is too difficult. The only way it could be done is by starting with babies. How do you acquire all the information? Would people queue up in the streets? All future generations of children and all immigrants would need some point of entry into the system'. She added: 'In the immediate term we need some sort of fairness'.
She said that people should be able to apply to a review body to have their DNA removed from the system and she warned that care must be taken so that people who volunteer to give their DNA should not be put off. The HGC is currently organizing a Citizen's Inquiry into the National DNA Database. Launching the tender exercise last month Baroness Kennedy said: 'The database has a preponderance of samples from young men stored on it, including the samples of one third of British black males. Further, under current law, it is very difficult - and sometimes impossible - to have your sample removed. On the other hand, a steadily increasing number of serious crimes including murders and rapes are being solved and criminals brought to justice with its help. It is likely that the use of DNA information by police authorities for criminal intelligence purposes will grow. It is therefore vital that the public are able to voice their views having had the opportunity to consider all the relevant issues'. Further information is available at www.hgc.gov.uk
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