DCAL issues a statement on Clause 14(4)(9) of the Human Fertilization and Embryology Bill
UCL's Deafness Cognition and Language Research Centre (DCAL) have recently issued a statement calling for a redrafting of the controversial Clause 14(4)(9) of the Human Fertilization and Embryology Bill 2007-08. This controversial clause would make it illegal for parents undergoing embryo screening to choose an embryo known to have a gene, chromosome or mitochondrial 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, in preference to one not known to have such an abnormality.
DCAL's primary concern is that this clause has potentially serious implications for deaf people's lives. The lack of clarity about the potential effect on deaf people considering infertility treatment is a cause for serious disquiet. DCAL is calling for proper discussions to take place with the deaf and disabled communities that will shape the design and drafting of a new clause.
There are complex issues to be considered in passing legislation on this issue. Now that we are able to have such choices, who has the right to make them? Who has the right to decide if a baby should be deaf or hearing? Deaf people's equality under the law must be considered. Instead, the current highly emotive media coverage suggests that the deaf community Is demanding "designer deaf babies". Deaf people are angry that this legislation is being proposed and their views have not been sought. Clause 14(4)(9) indirectly endorses unequal access of deaf people to fertility treatment should they need it, and many deaf people see this as a personal attack on their identity as deaf people.
Professor Bencie Woll, DCAL Director said:
"Clause 14(4)(9) isn't about designer babies; it's about equality and choice for deaf people. Their views have simply not been considered. They surely need to be a central part of developing this law. We need to make sure that the legislation is very clear about its intentions if the bill is not to be open to accusations of discrimination or eugenics. "
Notes to editors
DCAL Clause 14(4)(9) text
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updated: 30/03/2008