Genetic nightmares: is the battle being lost?

Because my reply to a Facebook friend’s post was too long, it has been turned into a blog entry.

To try to paraphrase the original message: the near future is looking like this:

Genetic testing isn’t going to focus on single genes any more, but to test all 20 or so thousand genes in our body. It’s simply cheaper and more cost effective, and enables patients to choose what they want to know about their DNA.

The testing of a deafness gene can therefore be offered as part of this ‘package testing’ – done through a process called sequencing. Deafness could be in there as part of a ‘medical conditions’ test.

All this appears to be being pushed through with very little consultation with the Deaf community (nor, indeed, any community); nor do they take into account whether such a practice is ethical.

“I get a sense the battle is over,” reports the individual, whose account should be respected given they appear to be a leading figure in the field of genetics where the deaf gene is concerned.

Here’s my response:

Many thanks for this, very valuable indeed, and full respect to the person who shared their thoughts with you 🙂

Here’s what I think. Knowing you are predisposed and doing something about it need to be separated. Do people want to know their entire genetic information, or even selections of it? Ok, I get there’s a big survey being done about it in the UK. But I can bet that if things speed up there would be all kinds of pressures on people to believe that it’s the liberal thing to want to know – you know the script.

Genomics could be highly useful in some cases – for example, if you go to the doctor complaining about an ailment, or if a child is born with a serious condition that affects, say, their health and growth, the genomics approach can identify the problem very quickly, and provide appropriate treatment. I’d love to see some advances on destroying cancer, in particular, for good, and if genomics can do that, great.  I highly recommend watching this lecture (it’s fully, non-automatically, captioned), as the speaker balances the issues – and highlights the role of economics and the military (this is not scaremongering in any way, it’s real stuff, Gregor Wolbring may shed better light than I can).

But to try and do something about a ‘condition’ such as deafness, a woman still has to go through an emotional process of Pre-Implantation Genetic Diagnosis, after going through IVF, to weed out embryo’s where there’s a significant chance of a baby being born deaf. Even then it’s not 100% that they will produce a child free of deafness. The alternative is they don’t have children, or find a partner where there’s less chance of producing a deaf offspring. A great bundle of fun that’d be.

Gene therapy is still not as productive or ‘advanced’ as scientists would like us to believe. Only last week there were reports about the lack of movement on stem cell research; i.e. it’s not coming to be the miraculous salvation the public has been led to believe, yet. We were told deafness was about to be eradicated in the late 1990’s, thanks to genetic and stem cell developments on furry little mice. Funny then to read a similar report recently stating almost exactly the same thing, 15 years later, leaving one to wonder what these people have been up to in their labs all these years. Refining the art of making over-claims in order to bag big research funding grants would be my guess. I would highly recommend reading Hilary and Steven Rose’s excellent book, ‘Genes, Cells and Brains’, which highlights why people should be skeptical…for the near and immediate future anyway.

Graham Turner and I, along with others, did some valuable research on the subject of Deaf people’s views about genetic counselling; Paddy Ladd and I have taken up the baton through our Leverhulme funded project, and are currently working on a monograph that puts things into perspective, charts a balance between sci-fi and reality. We found, through our research, that is the way it is.

Yes, things are happening. Fast. Scary. Depressing. Try Transhumanism for a laugh/cry. Gene therapy, especially, has started to flicker some lights, and there are serious people working on this stuff.

But I would suggest they are not ‘there’ yet; they want us to believe there are ‘breakthroughs’ around the corner. It makes sense for them to big it up because they need the money. It makes news, so the media are complicit. But there are reports of admissions that there are still 10-20 years to go to put things into practice on humans. Ironic that, since they said the same things 10-20 years ago.

Nevertheless, I take them seriously, but suggest they are posturing and positioning themselves to justify the need for new technology and systems once they breakthrough and find ways of driving society towards a Gattaca nightmare, all on the backs of Liberal ideology.  Action on Hearing Loss bringing on board ‘Deafness Research UK’ (an organisational euphemism for ‘let’s wipe out deafness for good and forever and be proud of it’) are obviously jumping on this bandwagon, in anticipation.

Social attitudes towards disabled people can shift though, thanks to high profile things like the Paralympics. Technologists and scientists are careful to ensure they talk about disease and disability in isolation, giving a glossy common sense feel that these things are bad, like putting an arm on the shoulder of the vulnerable and saying/signing: ‘you know it’s right, get tested, get rid of it’ all the while seeing pound/dollar/peso signs in their heads.  It’s up to concerned citizens to make the links and throw the discourse broader than genetics would like us to go; I guess academics would call it ‘being interdisciplinary’.

Now comes the positives, the good news. In the research Paddy and I have completed, our (albeit small scale) study shows, through focus groups, that people do shift their attitudes when presented with positive information about Deaf people’s language and culture.

The focus groups, by the way, were led by a hearing person, who was bought into run the groups, so people were not faced with a Deaf person where they might have felt obliged to change their minds. Probably just as well because seeing me, a Deaf punk, they may have changed their minds the other way.

We’d love to replicate that on a larger scale <hint hint>. When I taught on the ‘Enforcing Normalcy’ course at Gallaudet, students came up with creative projects to counter pessimistic and negative ways of viewing ‘normalcy’ and erratic scientific discourse. I was hugely inspired. These people are the future.

Our great battle with the clause in the HFEA wasn’t the only challenge to legal attempts to push through potentially eugenic practices: Deaf people challenged a eugenic proposal in California and got it thrown off the books. Positives can be found if you look for them.

Those who want to eliminate diversity would like nothing better than to make the lay public feel it’s all over, and while some things do come to an end, this is most definitely not it. There are some dark forces behind these ‘bright new future’ moves, who have the front to suggest that what they are doing is liberal. But they are effectively undemocratic and unethical, and don’t care.

Oops, that was a bit long, but in short: it is NOT too late. And as they say at the end of every episode of Crimewatch, after the viewer has watched several examples of people hurting other people, and making you feel the fear…’don’t have nightmares’.

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6 comments

      1. ah i thought it was probably to the article in the Cutting Edge about AB 2072. Thanks. and you took – Keep up the fight.

        ur write up about the lure of Stem Cells and genetics as being the cure of TMW when really it is way down the pike is important. Just the other day a reporter was asking us about “but soon stem cells will…” and i was like “really? really? Is that a fact or a wish by some foks? and if it were a fact – would that make it right and bright?”

        pause

        hmmm

        but it is a deficiency (being Deaf she meant)

        so me pal said “is being a woman a deficiency of having a penis”

        so discrete we be

        sometimes ya just have to be concrete when folks have been fooled by the notion of “normalcy” and when facing other folks who are eager to usher in your demise when in fact – it is not coming but the threat of it and the desire for it by the powers that be is ever present

        no wonder some folks have a hard time standing. When the whole world seems to be telling u – we’d be better off if ur kind didnt come around here no more…

        would love to see what ur students came up with

        and yep – this is why the Deafhood construct is so important because our students KNOW it is ok to be Deaf – we just got to get that secret out and about to the rest of the world.

        many folks are super cool about Deaf and the language of the hand eye people – just gotta help out the folks of ill will

        again many thanks for ur write up and look forward to ur and paddy’s book

        gives me hope and hardihood to forward march

        peace

        patti

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