Department of Health response to 19 March meeting

By Alison Bryan | April 8th, 2008 | Posted in Department of Health |


On 19 March representatives met the HFE Bill team at the Department of Health. The summary of this meeting can be found here in English and BSL.

The Department of Health has since formally responded to points raised, in English here [PDF] and a BSL translation:

4 Responses to “Department of Health response to 19 March meeting”

  1. Wirral Bagpuss Says:

    i cannot BELIEVE the arrogance of the response !!
    I agree with the example of the breast cancer scenrio that if there is a faulty embryo carrying the gene then this needs to be considerede for termination as unfortunately from personal experience i know that breast cancer is a killer and i know the pain /suffering that this causes. It is a killer so i can empathise with the need to eridicate this insideous disease. The sooner there is a cure then the better it will be as i dont want to see another family go through the hell of seeing a relative die from it.
    HOWEVER, to say that it is ok to get rid of a deaf embyro is sick beyond belief. I quote from the letter/response:

    …”However, some people would like to use PGD to avoid passing on an inherited deafness and if the specific inherited
    condition meets the criteria in the Bill, as applied by the HFEA and their code of practice, it is our view that this would be an appropriate use of the technology*

    WHAT !!!!!! Deafness is not going to kill you. It is not a life threatening condition. Sure it can be a strugggle at times living with deafness but i do have a good quality of life, and i make a valuable contribution to society. Why should i be killed off?. Why should any of us. This statement is advocation deaf genocide for want of a better word. Have they ANY concept of deaf issues at all?

    Here is another statement

    “It is our view that the Government’s policy is appropriate with regards to balancing the wishes of the parents to choose a disabled child or a child with a serious illness or condition and the need to ensure the welfare of any child who is born”.

    Oh really ? I’d like to see them try and push that argument past me, because they wont win !! How dare the Government impose restrictions on my Human Rights !!! Since when did they get the authority to play God ?

    In my opinion this is an appallying response and grossily offensive for the reasons highlighted above. Section 14 needs to be brought into wider public domain and properly debated. We are talking about life and death of future generations. and i also do not want to see the start of the slippery slide into facisim as demonstrated in the response.

  2. In this paragraph:

    “It is not appropriate, if it were possible, to use the technology to select for positive attributes such as athleticism, intelligence or hair colour. The provisions in the Bill do not enable testing for such attributes. Equally, if deafness is considered by an individual couple to be a positive attribute, it would also not be appropriate to use the technology to select for this attribute.”

    I am not going to nitpick over the usage of the term “deafness” but my perspective of this paragraph is that if you make it clear to the doctors/consultants, from the outset, that you clearly view that being D/deaf is a positive thing. Therefore, isn’t it saying if that is the case then it is not appropriate to screen for Deaf genes but will screen for other genetic defects that the parents place no positive value upon - meaning they would not know which embryo contains the deaf genes and therefore cannot discriminate?

    I haven’t fully digested the implications of this letter and would appreciate some guidance from you, Alison, who is considerably more experienced in making head and tails of these kind of letters.

  3. Alison Bryan Says:

    @Tony B - the use of “positive attribute” in this instance means you are NOT allowed to select for it. i.e. you cannot select for deafness, because they are saying its a “positive attribute”.

    What gets interesting, is apparently deaf / hearing has a double meaning. You are allowed to select for hearingness, and they are saying its not a “positive attribute” thus it can be selected out. Don’t know if that makes any sense? I have much more to say about this letter, just finding the time/energy to pull it together.

  4. […] on ‘deaf babies’ we are still failing to get the message across,and as can be seen from the Department of Health’s response to 19 March meeting with representatives of the Deaf community, inspite of the good work that the […]

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