This request appeared on the Deaf Village, asking for your opinions. If you’re interested in having your opinion heard, please contact Kate.
I am writing from a UK based television production company. We are currently working on a documentary about the IVF embryo issues arising out of Human Fertilisation and Embryology Bill being debated in the UK parliament. For those who don’t know the full details, it is a section of Clause 14 we are looking at which reads as follows:
“(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.”
Deafness would be included as an ‘abnormality’ in this law, therefore any parents would be forced to choose embryos with hearing genes as opposed to those with deaf genes. This is further elaborated upon in the official explanatory notes of the bill…
“Clause 14(4) contains a provision that relates to the provisions on embryo testing (see note on clause 11). New sections 13(8) to (11) amend the 1990 Act to make it a condition of a treatment licence that embryos that are known to have an abnormality (including a gender-related abnormality) are not to be preferred to embryos not known to have such an abnormality. The same restriction is also applied to the selection of persons as gamete or embryo donors. This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to result in a deaf child have been reported”
As some of you probably aware, many in the UK are against this bill, as they feel they are being forced to selectively breed out deafness where there is an option. Some we have spoken to simply believe that picking either deaf or hearing embryos should be a choice to be made by the parents as opposed to a dictate made by the government. Others think this can be seen a form of eugenics.
We would really like to speak to deaf people from any country who feel that given the choice they would choose the deaf embryo, and discuss their reasons for doing so. Or somebody who has already made that choice or is in the process of undergoing IVF at the moment. We understand this is a contentious issue, and assure you we will be dealing with this issue responsibly and sensitively. We will be presenting all sides to the argument and are not trying to imply this would be a choice made the majority in the deaf community, but just an individual’s. The director is an award winning UK filmmaker with a reputation for intelligent, responsible journalism. We would also like to hear from deaf people who support this clause and anyone else with strong feelings about the issue.
Please contact me at this email address: kate at popkorntv.com and let me know if you have any queries. We are only in the research stage, so everything is off the record and there’s no obligation to take part in the film.
kate at popkorntv.com