The Human Fertilisation and Embryology Bill [HL] 2007-08 was introduced to the House of Lords on August 11, 2007. From what I see, it has passed through the House of Lords and has undergone its first reading in the House of Commons. It has not undergone its second reading and there is no date listed as to when that will be. It must pass both houses to become law and if the House of Commons passes the bill, it is returned to the House of Lords for them to review any changes made. It can go back and forth between the houses before being ratified. It then needs a Royal Assent which is done by the Queen which is more than likely automatic.
The reason why I am talking about this bill is that it prevents any deaf babies from being born through IVF (In Vitro Fertisation). It really means all “serious physical or mental disability, a serious illness or any other serious medical condition” babies in general, but specifically targets deaf babies in its Explanatory Notes (see second indentation below). The bill itself states(clause Clause 14/4/9):
“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 serious physical or mental disability, a serious illness or any other serious medical condition must not be preferred to those that are not known to have such an abnormality.” (emphasis added)
I kind of understand why the British government might be doing this. Most of England (if not all of England) uses the National Health Services or NHS. There is private insurance but is usually used to “top up” or as an addition to the NHS. Only about eight percent have private insurance. If a deaf baby is born, then the question is does the NHS have to pay for services such as hearing aids, cochlear implants, deaf education, speech therapy, etc.? The government might be seeing this as a way to cut insurance costs. I do wonder if these deaf services can be paid for by private insurances. However, if this were the case, would it be financially penalizing deaf children for their parents’ decisions?
This is in the Explanatory Notes:
“110. 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. Outside the UK, the positive selection of deaf donors in order deliberately to result in a deaf child has been reported. This provision would prevent selection for a similar purpose.” (emphasis added)
I said “target deaf babies” above because it sounds like the whole reason for this bill is because someone heard about this intent to go about IVF with the result of a deaf baby.
Conveniently enough, they are excusing the Catholic representatives from the vote.
“The issues vex scientists. To date, however, the government has refused to back down, further inflaming debate. How the bill will finally emerge from the ensuing negotiations is difficult to determine. One option being discussed is for chief whip Geoff Hoon to impose a ‘soft whip’, meaning Catholic cabinet ministers such as Ruth Kelly and Paul Murphy can be conveniently absent from the vote over issues concerning abortion, rather than having to choose between their government and their consciences.”
I believe that this decision should be left to the people rather than to the government. Because then it gets into: Well, where do you draw the line? What exactly is a “serious physical or mental disability, a serious illness or any other serious medical condition”?
I believe that deaf people can lead meaningful and valuable lives, and it is sad that the British Parliament is sending a message to the deaf community that it doesn’t believe that (whether it actually intends to or not).
It would be interesting to see if the United States picks up on this and what the government decides to do (if anything). I have some concern with the idea of installing a national health care system in the United States because of what’s happening in England.
Note: I am not an attorney, nor am I a British citizen for that matter. This is what I know and understand and have thought about for the last few months that this has been in the news. For more information about what is going on, I suggest going to Grumpy Old Deafies, which is a UK Deaf blog. They have been diligently following this matter for quite some time.
Important Edit: It now sounds like references to deafness are being removed from the bill.
“Now, however, the Department of Health has agreed to cut from the Bill any reference to deafness as a serious medical condition.”