Nothing About Us Without Us!
My friends over at the mainstream blog Liberal Conspiracy have been debating the Human Fertilisation and Embryology Bill for months. They were mostly concerned with the section of this potential new law that deals with abortion rights. This time, I’m more concerned with a new amendment that will, if passed when MPs vote on the Bill on Wednesday, allow tissue to be used from people who lack the “mental capacity” to give consent.
This list includes children, whose parents would be allowed to give consent on their behalf, but I am going to focus on what this means for people with learning disabilities, or for those who have developed diseases like Alzheimer’s.
The Bill has always been controversial, but from the start, its defenders have stressed the importance of gaining consent from anyone whose tissue will be used to form human/animal hybrid embryos. However, the possible amendment that has now been revealed throws doubt over their assurances.
Under the amendment, if a person was deemed unable to give consent their carer would make a decision on their behalf. If the person did not have a carer, researchers would nominate a person to make the judgment.
This amendment has already been agreed by 17 MPs who were in charge of finalizing the Bill. Apparently, though, this has been done without any debate or discussion in Parliament. This, at least, is some consolation for those who believe, like I do, that this amendment, if passed, will cross a fundamental line in medical ethics. Of course, it will also ignore the basic human right of those who lack, or lose, the intellectual ability to make decisions like these for themselves.
A counter-amendment, deleting the changes to consent, has been listed for the bill’s final debate on Wednesday, but campaigners fear it is unlikely to be discussed, as it is one of dozens vying to be chosen for the bill’s final debate before MPs vote.
Leading learning disability charities said they knew little about this amendment to the Bill, which has, not surprisingly, received very little publicity.
Catherine Elliot, from the Medical Research Council, said research would “rarely” be carried out without consent, because under the amendment, ethics committees must be satisfied the same research could not have been carried out using tissue from patients who had granted permission.
However, if this amendment to the Bill is passed on Wednesday, it will not only sweep away 25 years of progress in medical ethics. It will also sweep away too many years of hard work by Disability Rights campaigners to convince the mainstream world that we are human, too, and that they should do Nothing About Us, Without Us. In my opinion, both of these consequences will be great tragedies. Tragedies which will be prevented simply by not passing this amendment. Unfortunately, I have no say in this Bill, but I will keep readers of Same Difference updated on the progress of this amendment.