For some time now it has been known that Islington Deaf Campaign (IDC) are organising a march through the centre of London ‘to stop remove deaf gene’. From their website it is clear that their campaign has arisen as a result of the HFEB bill.
They are to be congratulated on that. A march will put further pressure on MPs and the government to drop or amend the clause. A march will receive media attention linking the government with Eugenics and that is something they will not want. It has also become particularly urgent in light of the fact that the Lords have completely ignored the StopEugenics campaign, and therefore the HFEB Bill and the clause is now set to be processed through Parliament…unless it can be stopped.
However, there is some confusion with the aims of the march: are IDC organising against the entire Bill or just the clause?
StopEugenics has sought clarification on this but are still awaiting a reply. StopEugenics was not set up to oppose the entire Bill, only the clause (see here for some of the reasons why the whole Bill is not being opposed). Individuals might be against the Bill in principle and that is up to the individual if they want to oppose the whole thing, but not necessarily everyone in StopEugenics does so, and therefore StopEugenics is not in a position to support a march which opposes the entire Bill.
But there is a more fundamental problem. Nowhere in the Bill is there anything that will lead to the compulsory removal of the deaf gene. It is clause 14/4/9 that is the problem. If it becomes law it will mean a form of eugenics where parents can choose hearing genes over deaf ones, BUT only during the IVF process and then only if they decide to have the test for the deaf gene. If the clause is removed, however, it removes allowing parents the (eugenics) opportunity to create a hearing baby.
IF the march, however, is being planned as a general, broader attempt to ‘stop remove the deaf gene’, of which the clause in the HFEB Bill is just one example, then that would be a different matter and would undoubtedly be supported by a lot of those involved in the StopEugenics campaign. There does, however, need to be some clarity of the various ways in which the deaf gene is under threat other than from this clause; otherwise I am left wondering for what reason the march is taking place other than it being linked specifically to the HFEB Bill.