Deaf embryo row

By Katharine Quarmby

A heated debate has ignited about whether deaf parents should be allowed to select an embryo that has a deafness gene. The row has gained extra momentum because of the human fertilisation and embryology bill, which is due to have its second reading in the Commons in the next few months. Clause 14/4/9 of the bill allows a hearing embryo to be selected, but not one carrying a gene associated with deafness.

This debate has divided the community. On one side is the British Deaf Association (BDA), which is run by deaf people. The BDA states: “By codifying into law a preference for selecting embryos that are genetically associated with hearing, potential deaf people who would otherwise have been born will not have an opportunity to exist.

Francis Murphy, the chair of BDA, adds: “This is a sensitive issue and we respect the parents right to choose but we want to make clear that Deaf embryos should be treated as equally viable as any hearing embryos.”

Paula Garfield and her partner Tomato Lichy, who are deaf parents, want to use IVF to help them choose a deaf embryo. Mr Lichy says: “If hearing people were to have the right to throw away a deaf embryo then we as deaf people should also have the right to throw away a hearing embryo.”

The Royal National Institute for Deaf People (RNID), which isn’t user-run, disagrees. Its chief executive, Jackie Ballard, says: “Decisions about which embryo to implant are for parents and their clinicians, but RNID does not support the selection of a deaf embryo for IVF implantation where a hearing embryo is available.” But she adds: “We will be working with MPs to ensure that no deaf parent feels under any pressure to have their embryos screened during IVF treatment.”

Jamie Trounce (Disability Now’s design and production editor), who is profoundly deaf, agrees with the RNID. In an email contribution to a discussion on BBC London's Vanessa Feltz show, he said: “I don’t want to have a deaf child with my hearing girlfriend, but if my partner was deaf, I would still never choose to create a deaf child. It would be very unfair for the child. If the deaf child found out that its parents chose its deafness, they may feel devastated or resentful about it in the future.”