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Debating fertility legislation that affects the deaf community - a request for help

12 February 2008
By Dr Jess Buxton
Genetics Editor, BioNews
Appeared in BioNews 444
The Human Fertilisation and Embryology Bill currently passing through the UK Parliament has already sparked much discussion, particularly aspects such as the creation of animal-human embryos for use in stem cell research, and the removal of the 'need for a father' from the welfare of the child considerations. There has also been debate over the amount of detail in the new Bill - although it has left no stone unturned in covering every aspect of fertility treatment and human embryo research currently possible, there are concerns that an overly prescriptive piece of legislation will not cope well with new, as yet unforeseen advances in scientific technology and medical treatments (1).

One example of controversy arising from a law trying to cover every eventuality is provided by 'Clause 14', which has been the topic of two recent BioNews Commentaries (2,3). Clause 14 Section (9) will make it illegal for embryos which have a known genetic abnormality to be preferred for implantation to those which are not known to have an abnormality. For these purposes, 'abnormality' is defined as a serious physical or mental disability, a serious illness, or any other serious medical condition. Thus, prospective parents could not seek to use PGD to identify embryos with a particular gene mutation, with the aim of conceiving a child affected by a serious genetic condition.

This clause has been criticised, particularly by some members of the deaf community, as being potentially discriminatory - it would, for example, make it illegal for deaf parents, using PGD, to implant embryos with the genes for deafness if there are available 'hearing' embryos (the deaf embryo must not be 'preferred' to a hearing one). There have not yet been any requests to use PGD for the purposes of having a deaf child in the UK, and such use of the technology is likely to be considered by only a very small number of people worldwide. However, many deaf people view their deafness as part of their cultural identity, rather than a disability. While they may not actively seek medical intervention in order to have a deaf child, they would not view it as problematic in any way (4). Thus, many deaf people object to the wording of the current Bill, which they feel judges their deafness as a disability, a judgement that does not match their own experience.

In last week's BioNews Commentary (2), the authors felt the wording of this clause also undermines the general principle of reproductive liberty - the right of the potential parents to select intact embryos created from their own unaltered genetic material for implantation. This echoes concerns expressed by audience members at a debate held by Progress Educational Trust (PET) last summer, on the decision-making process in PGD. A large amount of the discussion at that event focussed on potential problems with prescriptive legislation in relation to PGD (for a full report of this debate, 'Parents or Parliament: Embryo testing, who decides?' see 5).

There is clearly a need to publicly discuss the implications of clause 14 further, as opinion is divided on these issues, both within the deaf community and elsewhere. PET is currently seeking financial support for a planned evening debate on this topic, to take place this April. In addition to the usual running costs, we require sign language interpreters and a palantypist, in order to make this event fully accessible to all. If you or your organisation is willing to make a financial contribution or provide services free of charge to help make this debate happen, please contact PET director Sarah Norcross at snorcross@progress.org.uk, or call 020 278 7870.

 

SOURCES & REFERENCES
1) Regulating IVF and embryo research: Balancing clarity with flexibility
|  24 January 2022
2) Legislation, Deafness and Reproductive Rights: Comments on Clause 14 of the Human Fertilisation and Embryology Bill
|  24 January 2022
3) Why it should not be illegal to implant 'abnormal' embryos
|  24 January 2022
4) 'I hoped our baby would be deaf'
|  24 January 2022
5) Parents or Parliament: Embryo testing, who decides?
|  24 January 2022
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Clause 14 of the Human Fertilisation and Embryology Bill states that in assisted reproduction, embryos known to be at risk of developing 'serious physical or mental disability' or 'serious illness' must not be preferred to embryos where there is no such risk (1). In the official Explanatory Notes to the...
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