The HFEB (eugenics) Bill does not remove the deaf gene but is still a form of eugenics

In this month’s British Deaf News (a regular column author), and also on a campaign blog, there is information about the Bill which is mistaken and needs to be urgently clarified.

The Bill does NOT authorise the removal of a deaf gene from an embryo, and neither does it ban deaf genes or embryo’s completely, either generally or via IVF.

The legislation would apply only IF the couple tested the embryo’s after IVF to see if it they are deaf or hearing, and then only IF there were a mix of deaf and hearing embryos.

In other words, the test is not compulsory; people do not have to have the test.

IF they have the test and the embryos are ALL deaf, they CAN have those embryos inserted.

IF they have the test and there is a MIX of deaf and hearing embryos they MUST ‘prefer’ the hearing ones (or they can simply decide not to have any put in).

The logic of this is quite simple: those people who are not bothered whether the embryo is deaf or hearing will simply not have the test. Those who WANT a deaf embryo will also simply not have the test (they won’t be able to choose the deaf ones, but they would HAVE to have the hearing one inserted).

But those who WANT a hearing embryo, will, of course, have the test since they will be able to choose the hearing ones. That is why it is a form of eugenics; people who WANT a hearing embryo can test and choose the hearing embryos over the deaf ones; those who are not bothered, or who prefer deaf embryos can’t.

It is, of course, possible to remove deaf genes; my understanding is that this has been achieved in experiments on animals, and it is possible in humans too. Sure there are people out there (medical people, the lay public, eugenicists etc) who’d be happy if this became widespread practice but that isn’t what this Bill would do. It could be argued that it might pave the way for making it easier to update the legislation to do so in future.

Finally a reminder: the clause does not specifically refer to deaf embryo’s but the deaf embryo has been referred to several times as an example of an ‘abnormal gene’ that this legislation would apply to.

Hope that clears things up.

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3 comments

  1. Does this address the matter of discrimation against the deaf would be parents? Specifically the BAN against discrimation.

    When deaf parents come to hav IVF because they couldn’t get it natural way, there is stiff discrimation against them and are turned away.

  2. Hi – Glad that someone has put this straight – however there is still a lack of clarity with regard to the actual genetic testing – there is no clear definition of what they mean by ‘defective’ or ‘diseased’ genes within the legislation – the risk of this is that the genetic testers may adopt a broad approach here regardless of the specifics.

    An illustration – a deaf couple are unable to have children and undergoes IVT and IVF and produces a number of embryos. Supposing one of them has a life-threatening gene that runs through the person’s family (say cystic fibrosis) and wanted the embryos tested for this condition – as the legislation stands, should the genetic testers test for deafness, the deaf embryo gets deselected regardless of whether it has CF or not.

    So it WILL affect deaf parents.

  3. I have consulted with a genetic counsellor to ensure the reply is accurate, hence the delay.

    The issues you mention seem to be related in that they are both to do with equal access to services, namely:

    1. As a result of this legislation, would deaf people be discriminated against in terms of how easy it is for them to access IVF services?

    2. As a result of this legislation, would deaf people be under pressure, if having PGD for a genetic illness in the family, to also have their embryos tested for deafness?

    The advice from senior people involved in genetics reported that the Bill was not intended to put any pressure on couples to test their embryos if they did not wish. Therefore, the answer to 2. above is no – they would be fairly confident about this, certainly at the moment, as from what is known about the small number of PGD services that are linked to genetic counselling departments they all work very clearly from the non-directive
    genetic counselling model.

    It is hoped, therefore, that in 1. above, deaf people should have equal access to IVF services if they are having infertility problems. It isn’t thought that there is anything in the Bill that would add to access problems.

    It is not known of a case where it was a problem for someone who is deaf. If you or anybody knows otherwise (i.e. that there has been a problem), let me know because if so that would obviously be a concern.

    Hope this helps and answers the questions.

    Steve

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