Deaf demand right to designer deaf children

Sarah-Kate Templeton Health Editor
DEAF parents should be allowed to screen their embryos so they can pick a deaf child over one that has all its senses intact, according to the chief executive of the Royal National Institute for Deaf and Hard of Hearing People (RNID).

Jackie Ballard, a former Liberal Democrat MP, says that although the vast majority of deaf parents would want a child who has normal hearing, a small minority of couples would prefer to create a child who is effectively disabled, to fit in better with the family lifestyle.

Ballard’s stance is likely to be welcomed by other deaf organisations, including the British Deaf Association (BDA), which is campaigning to amend government legislation to allow the creation of babies with disabilities.

A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist.

In America a deaf couple deliberately created a baby with hearing difficulties by choosing a sperm donor with generations of deafness in his family.

This would be impossible under the bill in its present form in the UK. Disability charities say this makes the proposed legislation discriminatory, because it gives parents the right to create “designer babies” free from genetic conditions while banning couples from deliberately creating a baby with a disability.

The prospect of selecting “deaf embryos” is likely to be seized on by campaigners against genetic screening who will argue that this is an inevitable outcome of allowing “designer babies”.

Doctors are opposed to creating deaf babies. Professor Gedis Grudzinskas, medical director of the Bridge Centre, a clinic in London that screens embyros, said: “This would be an abuse of medical technology. Deafness is not the normal state, it is a disability. To deliberately create a deaf embryo would be contrary to the ethos of our society.”

Ballard, who previously ran into controversy as director-general of the Royal Society for the Prevention of Cruelty to Animals (RSPCA) where she pushed through extensive job cuts, said in an interview with The Sunday Times: “Most parents would choose to have a hearing embryo, but for those few parents who do not, we think they should be allowed to exercise that choice and we would support them in that decision.

“There are a number of deaf forums where there are discussions about this. There are a small minority of activists who say that there is a cultural identity in being born deaf and that we should not destroy that cultural identity by preventing children from being born deaf.”

Ballard added: “We would like to retain, as far as possible, parental choice, but it has to be in conjunction with a clinician so that people know exactly what they are choosing.”

Next month a coalition of disability organisations will launch a campaign to amend the bill to make it possible for parents to choose the embryos that carry a genetic abnormality.

Francis Murphy, chairman of the BDA, said: “If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be ‘like them’, sharing the same characteristics, language and culture, then we believe that deaf people should have the same right.”

Murphy added that the BDA believes it is very unlikely that it would become common for deaf parents to deliberately create deaf children.

To create a “designer baby” using preimplantation genetic diagnosis, couples need to go through in vitro fertilisation (IVF) even if they could conceive naturally. The embryos created are then genetically screened and normally only the healthy ones are implanted in the mother’s womb.

This weekend the RNID played down Ballard’s comments by pointing out that the charity does not advocate deliberately creating deaf babies.

A spokesman said: “While the RNID believes in the individual’s right to choose, we would not actively encourage the selection of deaf embryos over hearing ones for implantation when both are available.”