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August 18, 2008

Genomics News
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» Deafness and Genetics: What do deaf people want?

Wales Gene Park have another event planned that will be looking at genetics from the perspectives of the D/deaf community and those who are heard of hearing (For info on the previous event please see blog ‘Deaf Kids: Who Decides?’). At the workshop on Sept 18th results from a national research project ‘Deaf individuals’ understanding and perception of genetics and their needs from a genetic counselling service.’ will be disseminated and discussion around how to develop genetic counselling services for deaf people and their families will take place. Those attending will be invited to vote (electronically) on a number of questions. BSL interpretation will be available.

The workshop will be specifically targeted towards: 1) members of the public (deaf, hard of hearing, culturally Deaf adults) 2) representatives from various organisations/charities for d/Deaf and hard of hearing people, 3) representatives from the Council for the Advancement of Communication with Deaf People and other organisations involved with interpreting 4) health professionals (genetic counsellors, geneticists, paediatric audiologists, ENT surgeons, audiological scientists, community paediatricians – i.e. people who refer to genetic counselling and see families with deafness) 5) genetic service purchasers and heads of clinical genetics departments 6) deaf studies academics (social scientists, deaf studies researchers, health psychologists working in the field of deafness)

Information is available below: Workshop flyer Provisional programme Workshop overview

To reserve a free place please contact Angela at burgessam@cf.ac.uk or 029 2068 2140 (voice or via TypeTalk)

March 10, 2008

Genomics News
gennews
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» Deaf Kids: Who Decides?

Wales Gene Park in association with Progress Educational Trust are hosting a public discussion on Wed 9 April @6.30pm at Techniquest (Cardiff). The event will be looking at the Human Fertilisation and Embryology Bill currently going through parliament which includes a clause that will prevent the selection of embryos with a known ‘gene, chromosome or mitochondrion abnormality’. This would include gene changes known to be associated with inherited deafness. Whilst there has never been a request in the UK to select for inherited deafness during PGD (pre-implantaion genetic diagnosis) there is concern that elements of the Bill (including this clause) are being over prescriptive. ‘Clause 14’ has created a big stir, particularly within the Deaf Community where some do not view deafness as a disability; stick ‘Clause 14’ in Google and you are presented with a host of links that include blogs, YouTube items and media reports.

For more info on the event contact Claudine Anderson at the Gene Park: Tel: 02920 475475 extn 253 Email: AndersonCN@cardiff.ac.uk See flyer Pdf