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HFEB: Explanatory clause on deaf selection

Much to report on the subject of the Human Fertilisation and Embryology Bill that is going through parliament. Things have been moving fast in the background, and we are having to try and digest complex law in a short space of time. A huge thanks to people (including internationals) for their support - we need it.

The Bill reaches the Committee stage at the House of Lords on Monday 3 December, so timing is extremely tight for our first battle. Today the first preliminary response was submitted. More later.

However, wanted to mention something about how the international stage has had an effect on this legislation, and something we all need to think about and be ready for. Within the Bill's explanatory notes is note 109 which states:

Embryo Testing

109. Clause 14(4) contains a provision that relates to the provisions on embryo testing (see note on clause 11). New sections 13(8) to (11) amend the 1990 Act to make it a condition of a treatment licence that embryos that are known to have an abnormality (including a gender-related abnormality) are not to be preferred to embryos not known to have such an abnormality. The same restriction is also applied to the selection of persons as gamete or embryo donors. This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to result in a deaf child have been reported.

We are unaware of any situations to date where an embryo has been specifically tested for a deaf gene by deaf people, then selected. In any case, genetics is not as simple as that. There's 200+ deaf genes, and even if its present we don't know how this will be expressed, i.e. deaf or hearing baby, and the factors determining this are complex.

However, through media misreporting we think this may be down to choices deaf people have made in respect of donors (egg or sperm donation), and now there is a political backlash.

Think about the implications of this law's intention:

- What about a straight relationship that needs IVF intervention - does that mean a deaf gene carrier can never partake in donation of eggs / sperm?

- For gay relationships - a deaf gene carrier (say a friend) can never donate their eggs or sperm for the conception of a child? (Incidentally this same Bill attempts to strengthen gay parenting rights).

What do you think?

Human Fertilisation and Embryology Bill: Explanatory Notes

See also:
Parliament: Deaf Embryo selection to be made illegal

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