Genetics HFEB – links to articles in t.v., media, online, etc.

Here are some further links on HFEB Bill you might like to see:
http://breeze01.uclan.ac.uk/eugenics/ ‘See Hear’ on the Bill, for our international friends! with big big thanks to Clark

http://www.bionews.org.uk/commentary.lasso?storyid=3697 Supportive article written by Heather Bradshaw, who is based at University of Bristol; thanks to Anna for bringing to my attention.

http://www.gsdnet.org.uk/content/events/ The ‘Group for Solicitors with Disabilities’ have highlighted the StopEugenics campaign here; thanks to Alison for the link.

There are at least three more related that I know of to follow, and one other TV production will cover the issue, all links will be posted here

See Hear on iPlayer (30 Jan)

Kindly notified by a friend that BBC See Hear interview can be seen here by UK people

http://www.bbc.co.uk/iplayer/page/item/b008vrdm.shtml?q=see+hear&start=1&scope=iplayersearch&version_pid=b008vr95

Tiger

The HFEB (eugenics) Bill does not remove the deaf gene but is still a form of eugenics

In this month’s British Deaf News (a regular column author), and also on a campaign blog, there is information about the Bill which is mistaken and needs to be urgently clarified.

The Bill does NOT authorise the removal of a deaf gene from an embryo, and neither does it ban deaf genes or embryo’s completely, either generally or via IVF.

The legislation would apply only IF the couple tested the embryo’s after IVF to see if it they are deaf or hearing, and then only IF there were a mix of deaf and hearing embryos.

In other words, the test is not compulsory; people do not have to have the test.

IF they have the test and the embryos are ALL deaf, they CAN have those embryos inserted.

IF they have the test and there is a MIX of deaf and hearing embryos they MUST ‘prefer’ the hearing ones (or they can simply decide not to have any put in).

The logic of this is quite simple: those people who are not bothered whether the embryo is deaf or hearing will simply not have the test. Those who WANT a deaf embryo will also simply not have the test (they won’t be able to choose the deaf ones, but they would HAVE to have the hearing one inserted).

But those who WANT a hearing embryo, will, of course, have the test since they will be able to choose the hearing ones. That is why it is a form of eugenics; people who WANT a hearing embryo can test and choose the hearing embryos over the deaf ones; those who are not bothered, or who prefer deaf embryos can’t.

It is, of course, possible to remove deaf genes; my understanding is that this has been achieved in experiments on animals, and it is possible in humans too. Sure there are people out there (medical people, the lay public, eugenicists etc) who’d be happy if this became widespread practice but that isn’t what this Bill would do. It could be argued that it might pave the way for making it easier to update the legislation to do so in future.

Finally a reminder: the clause does not specifically refer to deaf embryo’s but the deaf embryo has been referred to several times as an example of an ‘abnormal gene’ that this legislation would apply to.

Hope that clears things up.

My See Hear complaint

Annoyed with the way my See Hear interview had been conducted (see previous entry) I decided to complain. It had been that bad I was considering withdrawing from it.

Now, let me make a few comments about the nature of a ‘complaint’ from my point of view. It can be quite a positive thing to do; not only empowering from the complainers perspective, but it might actually lead to changes for the better.

The complaint was centred on the professionalism of the producer (and was nothing personal, he seemed like a nice enough guy), who seemed to be far too involved in the subject to maintain any impartiality. It’s impossible for anybody to be completely neutral, we all have views, feelings and beliefs, etc; the problem for me was that they seemed to have become as important, if not more important than, having a debate over this issue. I’m not interested in ‘winning’ debates, there are no winners or losers, although I know people will look at it that way.

I received a prompt reply from the Editor of See Hear, who apologised for what had happened, and he wrote that the producer was also very sorry for what had happened.

I have accepted that for now…will have to wait to see how the programme turns out.

My interview on See Hear

What an experience! If anyone enjoys chaos, argument, stress, this was one to crave. On Thursday 17th January I was interviewed on See Hear as a representative from the Stop Eugenics campaign.

I was given the questions that would be asked, sent to me the day before by the producer, and did a little prep on how I would answer those once in the hot seat. Admittedly my mind had been a little haywire in the days running up to it, for personal reasons.

I struggled to answer the first few questions: am not sure why, probably psychologically was the small matter that it’d be broadcast, and being on t.v. isn’t something I enjoy. Also, lack of proper preparation, since the Xmas break had only just ended a week previously.

Prior to the interview one question was causing concern and a sign language interpreter sought clarification. That resulted in a long discussion between the interpreter and producer which delayed the interview by 35-40 mins. When we came to that question in the interview, and after I had given my answer, the producer stopped the interview and said I had not answered the question properly. We then entered into a discussion about the question and it became apparent we had a differing of opinion on the nature of the process of IVF and embryology.

No kidding I fully understood where the producer was coming from. In my attempts at communication I was trying to make sense of and understand that. His argument centred on when an ‘embryo’ becomes a ‘person’. We do not, he was arguing, develop into a ‘person’ until 24 or so weeks: until then we are an ‘embryo’.

There are two problems with this. Firstly, it enters the debate into completely different territory, cos we then get into a debate/argument about the nature of the embryo, rather than what the proposed legislation plans to do. The clause is related to having a test specifically to weed out ‘abnormal’ embryo’s; by the reckoning of Lords, Politicians and the Department of Health, that includes embryo’s that have a deaf gene. That brings us to the second point: the proposed Bill is set out specifically to select hearing embryo’s over deaf ones (presuming, of course, that the prospective parent have the test).

To ask the question, therefore, of how the child will feel if they grow up ‘knowing their parents had not had the test and therefore deprived them of a sense’ (not my words) assumes the chosen embryo could still develop either way. My argument with the producer was that it’s a hypothetical question since the test for hearing embryo’s is to choose an embryo and that you assume it is going to be born hearing. It’s the legislation that assumes that, not me! It will mean the deaf embryo would have been discarded after a test, and hence the deaf person would not have even been born (let alone be around to complain!)

As I tried to explain to the producer, and as I stated on camera, the question could only become relevant if that person was genetically modified from hearing to deaf, which is not what the legislation is all about.

The argument was not really the most annoying thing; in fact I found that quite interesting and was calm and far from angry in my reasoning. It is what happened as a result of it that was unacceptable.

After I started to contact a genetic counsellor for a second opinion the producer decided to drop the question. He then said something to the effect that I had ‘lost the argument with Baroness Deech’ (presumably because in the producers eyes I had not really responded to it). The producer seemed to be very frustrated and may have been shouting; I got the impression, rightly or wrongly, that he had some strong personal beliefs about the matter.

A staff member, overhearing our discussion, had earlier intervened to argue with the producer, basically in my favour. I believe it would have been possible to have rephrased, modified or broken down the question and given a reply to parts of it but the producer seemed so fixated on the issue of when an embryo becomes a person, and after all this I was frankly very fed up, and so we never did return to the question.

The rest of the interview was spent mainly answering questions that had not been sent to me beforehand; not that there are any objections to this but I did wonder why I’d been sent some questions but not others. Those last questions were mainly asking for my response to comments made by Deech or the Department of Health; I was really stressed by that time, but think I managed to put together responses to them.

After the interview I was burning with anger, wondering why I had bothered making the trip from Edinburgh; I’d gotten up at 4.30am to get the train down. Because the interview didn’t end until 6.30pm and lack of tubes on the circle line meant I didn’t get to Kings Cross until 7.45pm I missed the last possible chance of getting back home the same evening.

However, the day did have quite a nice ending. I have always wanted to take a trip on the Caledonian Sleeper: since I was a boy actually(!), and apparently my ticket would be valid for that, all I needed to do was go to Euston and make a reservation. So I hurried off there, quite excited if I’m honest, and got my ticket, opting for a seat rather than a berth. It was quite comfy, and as the seat next to me wasn’t occupied I could put up my feet.

The sleeper left Euston at 11.45pm and got into Edinburgh at 7.15am the next morning…and once I got into Heriot-Watt, I wrote out a complaint to the Editor of See Hear (see next entry)

StopEugenics debate summary update

What kickstarted it all? Click this link to see the post by Grumpy Old Deafies which outlines the Clause being referred to.

A StopEugenics website was created and a e-group set up. The Sunday Times asked for further information on the campaign and wrote up an article entitled Deaf Demand Right to Designer deaf children.

I quickly penned a reply entitled Not Quite With the Times. Comments can also been seen in response to this.

Another article related to the campaign and opposition to the Clause can be seen in this online article by BioEdge, in which I am again quoted.

More to follow, the above is the background and beginning.

Completely ridiculous

The purpose of setting up this blog urgently has come following the discovery of Clause 14/4/9 of the HFEB, currently undergoing its third reading in the House of Lords.

The Bill relates to unborn embryo’s at IVF stage but is already demonstrating appalling prevailing attitudes towards Deaf people in our society. The media has been leading the way, completely misrepresenting what the campaign to stop this particular part of the Clause is all about. In it’s misrepresentation it risks unleashing a backlash against Deaf people.

In the fury of the media reporting, what can we do? Either challenge, in whatever way possible, some of those misrepresentations, or keep quiet for fear of fanning the flames.