I would like to follow up on the Human Fertilisation and Embryology Bill which was first mentioned in the last issue.  As I had explained previously; at the time of writing the column for the January issue, it was the beginning of December, when we were still in the early days of the campaign.

We simply wanted to raise awareness in relation to clause 14 (4) (9) of HFEB, which has a very large implication of Eugenics for the Deaf Community and I had raised this matter myself with Baroness Jane Campbell, who is a commissioner of Human Rights and Equality Commission and Chair of Disability Group, at the House of Lords in December 2007. Also, we want to work with other organisations and partners in trying to carry the message and to enforce the change to the particular section of the Bill before it completes the circuit in Parliament later this year.

Sometimes things can happen that massively increase the challenge for us to work together in achieving our shared goal.

This can be best illustrated with The Sunday Times article on 23^rd December 2007 which carried the headline ‘Deaf demand right to designer deaf children' and where the article by the Health Editor Sarah-Kate Templeton had purposefully distorted the messages from RNID's new CEO Jackie Ballard and quoted myself out of context to support the position that Deaf people are simply demanding to have ‘designer babies' who would be Deaf.

What I had stated to the Health Editor was the BDA's position on this matter in that Deaf people should enjoy full equality before the law and in terms of the Human Rights Act 1998, the European Convention on Human Rights, the UN Convention on the Rights of Persons with Disabilities and all other relevant legislation and protocols. If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be 'like them', sharing the same characteristics, language and culture, then we believe Deaf people should have the same right.

Furthermore, to clarify that in response to the questions from Sarah-Kate Templeton whether we are aware of any people who have actively pursued the Deaf ‘designer baby' with a simple ‘no' and that the BDA wished to make it clear that we think it very unlikely that this would become widespread practice. To present this issue in terms of opening the floodgates, with hundreds or thousands of Deaf people queuing up to make this choice, would be seriously misleading and potentially harmful to the position of Deaf people in society; which is already beset with prejudice, discrimination and disadvantage in many ways.

Of course, what was printed in the article was a selective editing of my quotes and showed a total disregard for the well presented messages from the key people involved in the Stop Eugenics movement (which BDA are closely working with) such as Alison Bryan and Steve Emery, as well as many noteworthy others. We had worked together in giving background information to The Sunday Times on why we were concerned with a very particular clause 14 (4) (9) of Human Fertilisation and Embryology Bill. This included the explanation of the BDA's draft response to the HFEB.

Indeed, as Alison Bryan has said to the eugenics@deaf-law.com egroup after the article was published, that a more appropriate headline would have been ‘Hearing demand right to designer hearing children .... Deaf people were forced to respond'. Alison further clarified on the concern with the clause 14 (4) (9) ‘Parliament is trying to pass law that makes it legal to screen out deaf embryos, and basically toss them in the trash bin just on the basis they are deaf.  Deaf people are NOT advocating selection. But parliament is trying to pass a law that allows hearing people to select hearing embryos only.'

The BDA welcomes any support from people in ensuring that the above scenario will not happen in a supposedly civilised and prosperous country such as ours, and already the movement is having international support because this is perceived as an international issue. With the wider support we will be halfway there.

For more information you can contact us via the BDA website www.bda.org.uk or the eugenics@deaf-law.com.