Reproductive liberty and deafness: Clause 14(4)(9) of embryo bill should be amended or deleted
3rd May 2008
Amendments to the Human Fertilisation and Embryology Act 1990 are currently passing through the UK Houses of Parliament.1 Clause 14, section 4, number 9 (lines 23-30, page 10) says that people or embryos known to have a gene, chromosome, or mitochondrion abnormality that confers a significant risk of serious physical or mental disability, serious illness, or other serious medical condition must not be preferred over those not known to have an abnormality.
This clause has been added to prevent positive selection of deaf donors deliberately to result in a deaf child, and one outcome would be that deaf parents could not use preimplantation diagnosis to select embryos with genes for deafness.
If passed, the bill would make it illegal for
a deaf adult to donate gametes for in vitro fertilisation, even to close relatives. It would be illegal for deaf parents, using preimplantation genetic diagnosis, to implant embryos with the genes for deafness if normal embryos were available.
Actively selecting for deafness is controversial. However, research indicates that few people want to do this,2 3 and requests to clinics for
the selection of “disability” are low.4 So, is it necessary to legislate against something that
is unlikely to happen and for which guidelines already exist?
This section of clause 14(4)(9) is discriminatory. The wording implies that deaf people are less valuable than “hearing” people, and likewise for their embryos. This contradicts attempts by the UK government to recognise the equal status of deaf people in policy (through recognising British sign
language) and in law (through equal rights for deaf people). Deaf people wish to have equal rights when making decisions about reproduction, even when genetic technology is involved. We are therefore arguing for
this section of the clause to be amended or omitted from the UK Human Fertilisation and Embryology Bill.