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: See flyer

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3 Responses to Deaf Kids: Who Decides?

  1. theagingfanboy says:

    It would be interesting to know what children who are the product of such selection in the U.S. think about it.
    How widespread is this? Are there any wheelchair users who want their children not to able to walk? Blind parents who want their children not to see? Diabetic parents who want their children to have diabetes?

  2. Gwyn says:

    Sick, sick, sick.
    Deafness is a disability no one wants to have.
    Deafness is not a club. Communication is a fundamental right for everyone. A disability in this case is what it says, an inability to hear. Theagingfanboy is right, where would it stop. My wife has suffered from a degenerative hearing loss from the age of 16 and is a teacher of the deaf. She would literally give her right arm to hear again.
    Whoever decides, lets have someone with some common sense and depth of thaught, now a rare commodity.

  3. Emma says:

    It’s a good point – would an individual view their disability (Deafness or other) differently if they knew their parents had actively sought it (via PGD) rather then leaving it to chance and accepting the outcome? How would they view their parent??

    I think that for some their view of Deafness is not one of disability or illness that needs treating, it’s that you are simply part of a community that is in a linguistic minority… being Deaf should not prevent access to all the same options in life as those who are hearing. Now whether society lives up to that is a whole new discussion!

    Selection for disability is possibly more widespread than I perceived – an interesting article in the NY Times quotes findings from a survey: 190 American P.G.D. clinics found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.” The article goes on to discuss selection for dwarfism.

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