Clause 14 of the Human Fertilisation and Embryology Bill states that in assisted reproduction, embryos known to be at risk of developing 'serious physical or mental disability' or 'serious illness' must not be preferred to embryos where there is no such risk (1). In the official Explanatory Notes to the Bill, and also during proceedings in the House of Lords, it has been specified that Clause 14 will prevent selecting embryos for deafness, prompting an outburst of responses in the media (2). Most have condemned the very idea of deliberately creating deaf babies, however, the concerns of the deaf community rest firmly on the Bill's language and intent.
This compelling theme was the focus of a debate organised by Progress Educational Trust (PET) and Wales Gene Park, held on 9 April at Cardiff's Techniquest, where a diverse audience, including members from the deaf community, clinicians and government officials, gathered to witness three experts: Anna Middleton, Consultant Research Genetic Counsellor at Cardiff University, Steve Emery, British Sign Language Research Associate at Heriot-Watt University and Colin Gavaghan, Lecturer in Medical Law and Ethics at the University of Glasgow, discussed just how far embryo selection show be allowed to go.
Anna Middleton opened the discussion by bringing audience participants up to speed with the meaning of Clause 14 and its potential implications for deaf people, namely:
1) A person with a serious genetic condition cannot donate sperm for IVF if a donor without such a condition exists.
She explained the role of PGD - the technology behind embryo selection - as a 'lifeline' for couples who feel practically or morally unable to accept the implications of bringing a child with a serious or life-threatening genetic condition into the world. Given the limitations of PGD - its low success rate, high cost and emotional difficulties - Middleton questioned the need for legislating against deaf embryo selection at all, particularly when her research has shown that very few deaf and hard-of-hearing adults say they would use genetic technology to select for a deaf child. 'The current situation of considering each couple wanting PGD on a case-by-case basis works perfectly well at the moment. Is there any need to change this?' she questioned.
Steve Emery, who is contributing to Middleton's project looking at Deaf attitudes to genetics, as well as co-running the online BlogSpot 'Stop Eugenics' - a campaign set up in response to objections over the Human Fertilisation and Embryology (HFE) Bill - argued that Clause 14 is paramount to eugenics on the grounds that it assumes hearing embryos should be preferred over deaf ones.
Emery felt that the value of deaf people - their unique language and culture as well as the significant contributions they have made to society as a whole - is currently being overlooked and that the law's current emphasis on the medical model of disability is partly to blame for this.
He went on to argue that clause 14 is discriminatory towards deaf people because it forbids them from creating children 'like them', whilst permitting hearing couples to do so. 'In reality, Clause 14 will allow hearing people to have hearing designer babies, not deaf designer babies', he said, claiming that this undermines deaf people's citizenship because it contradicts anti-discrimination laws, such as the Disability and Discrimination Act.
Emery felt that rather than create inequality in law, it would be better to 'leave it all to nature', thus forbidding couples from screening either for or against inherited deafness, a form of preference which he believes is no different from any other 'desirable' trait, such as intelligence, eye colour or athletic ability.
Last to speak was Colin Gavaghan, author of 'Defending the Genetic Supermarket: The Law and Ethics of Selecting the Next Generation' as well as numerous other articles on the topic of PGD. In particular, Gavaghan drew distinctions between 'making a deaf baby' and 'making a baby deaf'. 'It's completely unintelligible to argue that [a] child would be better off with hearing. Quite simply, the choice for that child was to be born deaf or to never be born at all', he said.
Although Gavaghan gave some examples of very extreme cases where he felt it was perhaps possible to argue that a child might have been better off never being born, he concluded that under most circumstances it is inappropriate for the government to interfere in such 'private, personal, intimate and decisions'.
Following the talks, a lively debate ensued, with audience comments ranging from those who perceive Clause 14 as the beginning of a 'slippery slope', to those simply interested in gaining a better understanding of the issues and clarification over how exactly the change in law might affect deaf people.
Among those to comment was Ted Webb from the Department of Health. He emphasised that one of the main objectives of Clause 14 is to give patients the choice over whether or not to have embryos tested for serious conditions. 'It's not forced on patients', he stressed. 'If deaf people want to have a child through IVF, they can do'.
Given the lack of public consultation conducted in British Sign Language (BSL), Sylvia Simmonds, representing the British Deaf Association, called for an extended consultation to allow the deaf community to raise issues with Parliament directly. In response, Ted Webb advised that, at this late stage, this would not be possible and that people wishing to make their views known should contact their MPs.
Professor Marcus Pembrey, Emeritus Professor of Clinical Genetics at the Institute of Child Health, said that the intention of PGD has always been 'to help families with what they perceive to be a genetic disadvantage, to live and reproduce as they wish', an objective which he referred to as 'reproductive confidence', and that the change in the law only enforces this principle.
One audience member, a parent of a deaf child whose late wife was a deaf lady with cystic fibrosis, raised the point that it is extremely difficult to place a value on someone, even when they have a life-limiting genetic condition. 'It is the families they're brought up in. It is not the genetic makeup that is the crucial factor', he said.
Another made the comment that many of the disadvantages experienced by deaf people - the language barrier, difficulties getting a job - are the result of the way they are perceived by society. 'What's the difference between a black person wanting a black baby, and a deaf person wanting a deaf baby?' he questioned.
This timely debate was an important milestone in the passage of the HFE Bill through Parliament, potentially highlighting issues which may yet trigger a change in the course of the law. Since the debate, it is rumoured that the Department of Health are putting in place plans to remove the reference to deafness from the Explanatory notes of the Bill, a move which would ultimately leave decisions about what counts as a 'serious genetic condition' in the hands of the Human Fertilisation and Embryology Authority (HFEA), the clinicians and the patients themselves.
Sources and References
3) 'Living Under a Deaf Sentence', The Times, 20 April 2008.