Is allowing a child to be born deaf a criminal act?

Published on Monday 5 May 2008 19:42

IN MARCH 2008, Tomato Lichy and his partner, who are both deaf, made public the fact that they want to have a second child. Their first child is deaf, and they want to have a second deaf child.

This desire is not without parallel, although it might be anticipated as being relatively rare. In the US some years ago, a deaf couple – Sharon Duchesneau and Candy McCullough – obtained sperm from a friend who was congenitally deaf and deliberately created a child who was also deaf. Predictably, this caused an uproar. Surely, it was said, every parent wants their child to be free of disabilities?

For many in the deaf community, however, being deaf does not mean that a person is disabled. Indeed, they would argue that deafness introduces people to a rich, vibrant culture and should not be seen as a negative characteristic.

Others would suggest that there should be limits to reproductive liberty, and that parents should not be permitted to deliberately engineer or select a child who will knowingly start life at a disadvantage. Indeed, the legislation in the UK that governs assisted reproduction gives people the choice of not selecting for implantation embryos that are in some way compromised.

Outwith the legislation, the routine provision of pre-natal screening has at its core the ability to offer women and their partners the choice not to proceed with a compromised pregnancy. Whatever the arguments for and against such screening, the choice to do so is enshrined in both lawful practice and statutory law.

At the heart of Lichy's concern is the fact that a bill currently making its way through Parliament – and which will amend the Human Fertilisation and Embryology Act 1990 (which has governed assisted reproduction for many years) – makes specific reference to the deliberate selection of embryos which have certain conditions. As he and his partner may need to use in-vitro fertilisation (IVF) to have their second child, this is of direct interest to them.

The bill says that, if embryos are identified as having a genetic status that means they will develop a "serious physical or mental disability, a serious illness, or any other serious medical condition", they should not be "preferred to those that are not known to have such an abnormality". Thus, if this couple had any embryos that were genetically predisposed to or programmed for deafness, they would not, on the face of it, be permitted to choose them.

The issue of whether or not deafness is a disability is at the heart of their concern. Those who believe it is not take issue with the terms of the legislation. But whatever the views of some in the deaf community, most people probably do regard being deaf as a disability and would expect that embryos genetically predisposed to deafness would be covered by the terms of the law. Of course, even those who feel this way might question whether or not deafness is sufficiently debilitating to amount to a "serious" disability, as required by the bill. Ultimately, deciding on these two questions may come down to a judicial review of the meaning of the term.

There are, of course, other issues at stake. For some, the matter rests on what right the state has to prevent people from making reproductive decisions. From this perspective, it is argued that the state should only intervene if there is evidence that failing to do so would result in harm to others. Since the embryo is not a person, it cannot be harmed by a decision whether or not to implant it. Equally, once born (even if deaf), the fact of the child's existence cannot be a harm, since the alternative was non-existence.

While the intention of legislators is meant to be clear, it may well be that there will be future challenges to the terminology used in the legislation. It remains to be seen whether the Equality and Human Rights' Commission, or indeed any other interested individual or group will take on the challenge.