A current bill before Parliament would revise the current regulation of IVF. One clause has caused great debate, especially amongst people with disabilities. It states:

(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop— (a) a serious physical or mental disability,

(b) a serious illness, or

(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

Some people with disabilities like deafness or dwarfism wish to use IVF to select embryos with the same disabilities. For reports of such cases, see Sanghavi, D. M. ‘Wanting Babies Like Themselves, Some Parents Choose Genetic Defects’, The New York Times, (December 5, 2006).

According to a recent survey, deliberate selection of children with conditions such as deafness or dwarfism is not uncommon: 5% of 190 of PGD clinics surveyed in the US have allowed parents to select embryos with conditions commonly taken to be disabilities (See Baruch, S. Kaufman, D. and Hudson, K. L. ‘Genetic testing of embryos: practices and perspectives of U.S. IVF clinics’ Fertility and Sterility (2006).)

Such selection would be illegal under the new Bill before Parliament. Should people with inherited disabilities, like some forms of deafness, be allowed to select children using IVF who have similar genetic conditions to themselves and similar disabilities? I have written extensively on this topic:

In the most widely publicised case, a deaf lesbian couple in the US deliberately created a deaf child. Sharon Duchesneau and Candy McCullough used their own sperm donor, a deaf friend with five generations of deafness in his family. Like others in the deaf community, Duchesneau and McCullough did not see deafness as a disability. They saw being deaf as defining their cultural identity and signing as a sophisticated and unique form of communication.

Such people are making a mistake, I believe, in believing that deafness is not a disability. Deafness makes life harder and makes it less likely a person will have the best life. Of course, someone with deafness may have the best of all lives (just as someone who smokes may not get lung cancer). The claim that it represents a unique culture that can only be fostered by being deaf seems mistaken. Hearing children of deaf people can learn to sign and communicate with their deaf parents, just as children of Chinese parents can learn English as well as Chinese. It is surely better to have the capacity to speak two languages rather than one, to understand two cultures rather than one. (It would be disabling for a child of Chinese parents living in Australia if the child only spoke Chinese, even though it might be easier for her parents to communicate with her.)

If deafness is a disability, many people believe that doctors should not assist couples to have a disabled child. It is important to distinguish two senses of “having a disabled child”. Imagine a couple has a child who is born deaf but who could hear if given a cochlear implant. They refuse. They clearly harm their child because that child is worse off (by remaining deaf) than it would otherwise have been (if it had the implant). There are legitimate grounds to interfere in such choices. But what if the couple have IVF and PGD and select a deaf embryo. Have they harmed that child? Is that child worse off than it would otherwise have been (if they had selected a different embryo)? Clearly not – another (different) child would have existed. The deaf child is only harmed by being selected to exist if its life is so bad it is not worth living. Deafness is not that bad. For this reason, I believe that couples who select disabled rather than abled embryos or fetuses should be allowed to make those choices, even though I believe they are having a child with worse life prospects.

We offer prenatal testing for Down syndrome in order to give people the opportunity to have children who they believe have the best life prospects. Each couple makes its own decision about whether to have a child with Down syndrome or not. Like deafness, I believe intellectual disability is bad. But my value judgement should not be imposed on couples who must bear and rear the child. Nor should the value judgement of doctors, politicians or the State be imposed directly or indirectly (through the denial of services) on them. There are good reasons to engage people in dialogue about their decisions, to try to persuade them with arguments, but in the end, we should respect their decisions about their own lives. This principle extends to their reproductive choices. Reproductive freedom is important. It is easy to grant people the freedom to do what you agree with; freedom is only difficult and important when it is the freedom for people to do what we disagree with.

Should scarce resources be devoted to respecting this kind of reproductive freedom? There is a paradox. Either such freedom is important, in which case it should be supported with taxpayer money. Or it is not important, in which case there is no problem with offering on a user-pays basis and only allowing those with the personal resources to buy it. The only legitimate ground for interference in such decisions would be if the public health costs of a whole population of people making such choices was significant. But it is unlikely that many people would make such choices and overall offering testing reduces the incidence of genetic disease in the community. Historically, medicine has been employed for the prevention and treatment of disease. Of course, that has not been exclusively so. Much cosmetic surgery is aimed at enhancing normal characteristics. And contraception and abortion mostly have nothing to do with disease. But requests to deliberately select a disabled child push respect for autonomy to its limits. Increasingly, people will seek to use medicine to improve their lives in ways which some may disagree with. Will we allow them such choices or only offer medicine on a “doctor knows best” basis?

News Links

Transcript (and podcast) of interview on BBC’s Today Programme with Tomato Lichy

Is it Wrong to Select a Deaf Embryo, BBC website

Choosing a Deaf Baby is Criminal The Times

The Hearing’s Difficulties, The Guardian

Some Gifts One is Better Off Without, The Telegraph

This Couple wants to Have a Deaf Child: Should We Try and Stop them? The Observer

Embryology Debate Intensifies in British Parliament, NY Sun