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Offline chimera

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Gene testing for geeks
« on: 01/06/2005 09:14:08 »
« Last Edit: 01/06/2005 09:33:25 by chimera »


 

Offline Ultima

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Re: Gene testing for geeks
« Reply #1 on: 01/06/2005 10:46:47 »
WTF having a kid with autism would be awesome! So long as you know they have autism and don't do anything to expose them to overt amounts of stimulus they can have a normal life??? Plus quite a lot of autistic people have very unique ways of thinking and perceiving the world. Who wouldn’t want a child like that.

wOw the world spins?
 

Offline DoctorBeaver

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Re: Gene testing for geeks
« Reply #2 on: 01/06/2005 16:05:24 »
I know 3 people with children who are profoundly autistic, 1 especially so. The latter can't speak or understand what is said to her. She is obsessed with routine & even the slightest change is enough to send her into 1 of her many extended tantrums during which she screams ceaselessly & throws herself & objects around. It is far from uncommon for these tantrums to last for a whole day or even sometimes into the next day. You can imagine what she's like when her special school is on holiday & her routine severely interrupted.
The other 2 can speak but display obsessive behavioural traits and the same need for routine. 1 insists that her toys & shoes are arranged in a certain order before she gets into bed & then re-arranged exactly-so once she's in. If just 1 of them is even slightly out of place a tantrum invariably ensues. They also both suffer from extended, violent & seemingly-random tantrums.
These are not the type of tantrums that can be cured as one would cure them in a "normal" (I hate that word) child. You can't ground a severely autistic child as you can't let them out of your sight anyway. Depriving them of something only exacerbates the situation & many would not understand if you tried to explain to them that their behaviour is wrong as they simply don't have any language. Even if they could understand it wouldn't do any good as they have no control over their tantrums.
My friend who has the most seriously affected child is lucky insofar as she herself has very supportive parents who will frequently take her daughter for a day or 2 to provide respite. Many parents of autistic children do not enjoy that level of support as the grandparents just can't cope & funding for state-sponsored respite is very limited and hard to get.

Autism is for life. There is NO CURE.

Still think it would be awesome?
 

Offline rosy

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Re: Gene testing for geeks
« Reply #3 on: 01/06/2005 17:47:41 »
Mm-mm. As I understand it ( and presumably DoctorBeaver'd have more information than I have) autistic spectrum disorders (ASD, including asbergers and also other more severe types of autism) aren't really "a disorder" but rather a set of syptoms which an individual may have to varying degrees.
Although there's a definite correlation within families, and therefore a genetic component, there's a general feeling that not all ASD-affected people have the same thing wrong with them.

As it's been explained to me, autism and aspergers are quite distinct in that an individual with aspergers syndrome will want to interact socially with other people, but will get into trouble because of an inability to pick up social clues as to how the person they're talking to wants them to behave (for example whether they're fed up of being told in great depth about warfare and weaponary through the ages), whereas autistic people want nothing more than to be left alone and not worried by people trying to interact with them.

Also, of course, there are essentially two populations of ASD affected people... some have cognitive impairments beyond the communication/social difficulties of ASD, whereas others essentially lie on the same sort of distribution of intelligence as the rest of the population.. some very bright, most less so.

Essentially what I'm saying is it's no use lumping all ASD sufferers together... some autistic kids will be a nightmare to live with and a never-ending source of worry to their parents about what will happen to them when they (the parents) are gone and can no longer provide the necessary care and routine themselves... which will almost certainly mean an institution of some sort. Which is why you hear harrowing stories of (usually mothers, often with a background in social care) taking their autisitic child by the hand and jumping with them off the top of a carpark, or equivalent.
On the other hand, I know a least one person studying for an undergraduate degree in Cambridge (and not for a degree in a science/technology subject, either) who because he's very bright is able to work round the Asbergers and is currently doing his finals.
Kids with Asbergers are far more hardwork, they have to be taught essentially to emmulate social skills that "normal" kids pick up automatically at a very early stage... but they (or some of them) can learn just to get on with life, leave home and carry on independently.

The difficulty, I guess, arises from the fact that what causes ASDs of various sorts doesn't appear to be at all well understood... "a genetic link" tells us nothing remotely useful. Especially where we're probably actually looking not at "an ASD gene" but at a cumulative effect from the combination of a whole range of genetic and probably environmental factors.
 

Offline DoctorBeaver

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Re: Gene testing for geeks
« Reply #4 on: 01/06/2005 18:49:56 »
Rosy - you're quite right in what you say. ASD covers a whole multitude of symptoms ranging from very slight to extremely severe. But whichever end of the spectrum a person is there are still major difficulties involved both for the sufferer and the carer.
I know a young adult with Asberger's & his problem, which you highlighted, is his lack of social skills. He has ended up more than a few times with a black eye or a cut lip where someone has hit him because of his reaction to a certain situation. He fails to read when someone is getting upset or annoyed & continues with what he was doing or saying regardless. He appears to be perfectly normal so others fail to realise he has this problem & they think he's just being stroppy (for want of a better word).
I remember when I was at secondary school there was a kid there who, in hindsight, I can now recognise as having had Asperger's. We just thought he was a gimp. We'd get him to crawl along the corridors for penny pieces. But in physics classes the guy was an absolute genius. Even at 13 years old he was teaching our physics teachers!
I know in my earlier reply I was highlighting the severe end of the spectrum, which may have been a bit unfair of me: but even being at the other end is no laughing matter.
As for causes - the girl I mentioned who has the most severe symptoms has a Mosaic Chromosome Disorder (I once sent a question about that to Chris in the studio & he was kind enough to give a concise & understandable answer on air). I'm not sure whether that is a contributory factor in her case but I believe there's a strong possibility that it is.
Although I'm a psychologist my speciality is addiction/dependence. I studied ASDs in 1 module when I was taking my BA but that was a long time ago and have only taken a subsequent interest due to my association with my friends. I am far from being an expert on the subject.
« Last Edit: 01/06/2005 18:54:39 by DoctorBeaver »
 

Offline chimera

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Re: Gene testing for geeks
« Reply #5 on: 02/06/2005 11:29:45 »
I think it's a whole spectrum, ranging from being slightly more aware of the fact you're aware than others, to the horror-like 'addiction' to rules and recurring themes.

It's a matter of a problem to 'integrate' some kind of very physical structuring in our memory. It has to do with our vestibular sense, in my opinion, and with how we literally 'embody' observed rhythms and patterns in our cognition, and it takes place in one of the oldest parts of our brains, the brain stem, still a poorly understood part of our body, since the (neo)cortex gets most of the credits.

In the above range, from slight to worse, there would only be a very slight 'delay' in the 'processing' of awareness, and lead to the bonus (some would say) effect of 'being aware of being aware', but all the time. Most people realise things do NOT work that way for them. They are going on a blessed form of auto-pilot, completely obsessed with what they are doing, and not so much 'separately' aware THAT they are doing something.

Now if this delay in 'embodiment' takes on serious proportions, like with the cases Eth describes, it may fail to 'catch' at all. Then patterns have to be relived and relived, like some bad movie. We are so used to doing it we're not even aware of it, but our body posture and our muscle tone play a much larger role in how our consciousness works, and a lot of it is automatic. When we 'reach out' for a concept, or 'acquiesce' to a fact of life, that's much more of a physical action than we give it credit for. We partly think with our bodies.

So anything going awry with our 'vestibular processing' hits us directly in the most precious of all our posessions: our mind.

The living are the dead on holiday.  -- Maurice de Maeterlinck (1862-1949)
 

Offline memasa

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Re: Gene testing for geeks
« Reply #6 on: 04/06/2005 13:30:02 »
I didn't read everything you have said so far on this subject, but being born disabled, I strongly object all kinds of Darwinist thinking.

My condition isn't genetic -- the doctors f*cked up "a few" things... But I'm not bitter because I'm really able to do everything my "normal" brothers (I'm a twin, BTW) do -- Aikido excluded. And if you ask me, I'm very sociable, fairly intelligent, and handsome (or so they say ;).
« Last Edit: 12/06/2005 20:32:43 by memasa »
 

Offline memasa

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Re: Gene testing for geeks
« Reply #7 on: 04/06/2005 15:48:10 »
P.S. And if I will be a father, I will hold on to that principal. I emphasize, though, that my condition isn't genetic. But things don't always go as planned...

P.P.S. Of course, everyone wants to have a healthy baby, me too. Nurturing a disabled child is not easy. But, theoretically, if my child was disabled  I would surely have better than average mental resources to cope with the situation.

This is a bit off-subject...
« Last Edit: 09/06/2005 11:42:08 by memasa »
 

Offline Ultima

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Re: Gene testing for geeks
« Reply #8 on: 12/06/2005 22:23:37 »
quote:
I didn't read everything you have said so far on this subject, but being born disabled, I strongly object all kinds of Darwinist thinking.


Howcome? Obviously there are many cases where disability is caused from human administered error; a good example is with the use of Thalidomide which was a horrific mistake. However these kinds of thing can’t account for all known "disabilities" since we have historical accounts of many medical conditions long before doctors were involved? I guess it’s true that something such as alcohol that appears innocent enough can have profound effects on foetal development could mean that just about anything could cause a problem. But since alcohol is damaging in itself it’s a bit implausible to say that environmental factors or human intervention are to blame for all disabilities. The same goes for using genes as a get out clause so as not to investigate some disorder in greater depth. We are only at the beginning of our medical understanding of anything, it's a bit early to rule ideas out.


wOw the world spins?
« Last Edit: 12/06/2005 22:25:23 by Ultima »
 

Offline memasa

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Re: Gene testing for geeks
« Reply #9 on: 13/06/2005 13:57:05 »
Disability Ethics

in Contrast with

Genetic Engineering

Ref. to the comment by Ultima


SOCIETY

By "Darwinist thinking" I referred to evaluating people by their superficial attributes; survival of the normal.
We should all strive for the acceptance of all "divegency" from what is considered normal, strive to an all-inclusive acceptance of all minorities.
One of the disabling factors is society itself -- despite social security. Major structural changes would have to be carried out for completely removing the disabling influence of society. The word of the day is, or should be, "integration" or "inclusion" (on all levels of interaction). In the end, all would benefit from these changes. Think about the workforce that is lost because of inequal schooling system and ossified labor market!
I hope these thoughts are not just my Utopia. ...What was the name of that black guy again, the one with a dream... ;) I heard he lives in St. Peter's Burg. :D Duh! I guess it's St. Petersburg. [:p]


WHICH WAY?

It's true that some people are against ANY human intervention in the development of an embryo. The debate is indeed interesting. There is no unambiguos biological, philosophical, juridical, ethical or theological solution to it. I am not one of those people.
Prevention of certain diseases and disabilities is acceptable -- after all it's a private (at least for now) and far-reaching decision. That just doesn't seem to be my choice as there are also some ethical problems to it:

 
  • Who will decide what's normal and hereby acceptable in the future? (The parents or the medical authorities?)
  • Where would we draw the line of normality? (Different lines for different nations?)
  •  Will dyslexia or autism, for instance, be acceptable in the future?
  • Will the borderline of normality really be based on health only, or will economical reasons also play a part?
  • Will human intervention in genetic processes have an effect on [natural] evolution in the long run? (Would that be a good thing at large? "Teenage mutant ninja turtles ... Donatello, Leonardo, Michelangelo, Raphael..." :D)
  • How to define human dignity? (Does being "healthy" make one more worthy as a human being?)

  • Gene tests vs Hippocratic oath(s) (There is no single answer.)
  • Are the tests reliable?
  • What if some authority decides to misuse the tests? ("genetic breeding" of human beings on false grounds = far-right extremism in disguise)
  • Will genetic engineering of the appearance or psychological traits etc. of your offspring be allowed just because you wish so?("Blue eyes and blond hair, please." We are far from this horrid vision, but you never know...)

  • Can the transparency of gene tests be guaranteed worldwide? (It would be practically impossible!)

ME, MYSELF AND I

If I had to decide to keep or not to keep a disabled baby, I would be very reluctant not to keep him/her. If I didn't allow him/her to exist (regardless of the disability), how could I allow myself to exist? Of course, I'm intentionally sharpening the issue because I truly want you to understand where I'm coming from. As you probably realize, saying "No, I don't want him/her to be born" would be extremely contradictory from my perspective (of course, I would discuss the matter with the mother).


AN ARITHMETIC EXERCISE

Life is always precious! It's stigmatizing to say any disability would be an indicator of (in)humaneness. Besides, disability hardly ever means total inability. Moreover, disability hardly ever is just a minus, or a sum of minuses.
People with a hearing impairment, for example, view themselves as members of their own culture which shouldn't be destroyed with hearing implants. Even though I'm not hearing impaired myself I think their view should be respected. They -- and all that are disabled -- should be allowed to preserve the (constitutional?) right of self-determination. Even though a disability is not everything, it's a big part of one's identity.

N.B. We would have lost some of the great men and women of our time if gene tests measuring present normality had existed before. Are we willing to make that sacrifice in the future?


LET'S PLAY HIDE-AND-SEEK!

IF GENE TESTING HAD BEEN INVENTED A 100 YEARS AGO, HOW MANY OF US CAN ASSUREDLY SAY THEY WOULD BE HERE TODAY?


Think about the number of disorders that have been unavoidable so far... I know I wouldn't be here if gene testing had existed before! There are "unwanted" genes in every lineage.

The disabled are not a community (approx. 10-15% of European population is disabled) outside of society -- we(?) have never been actually outside. We are a "threat" from within ;), manifesting the phobias of those people who think they know what "normal" means.
Normality is as subjective as anything else. Disability-phobia has its roots in the Middle Ages:

quote:
In the Middle Ages, people thought that disabilities were caused by some evil spirit. The fear of that demon made people afraid of disabled persons.

http://teacher.scholastic.com/scholasticnews/indepth/special_olympics/background/index.asp?article=background


Thank you, God! I am a Devil's advocate, yes, whatever you say. I have to admit, though, that Old Nick pays me well. [}:)];) By the way, have you ever visited Hellsinki, our capital? The  city, a true hellhole, has grown into a metropolis recently, but you'll LOVE it! :D


THREE QUESTIONS REGARDING "GENE TESTED" SOCIETIES OF THE FUTURE

1. Is "pure" synonymous to better? (I am provoking, and I know that!)
2. What status will an "abnormal" individual generally have in a future society? (Will a new pariah caste be created?)
3. What kind of relation will the people of the future have to their history?


MORE LINKS

http://www.hgalert.org/ (this one especially: http://www.hgalert.org/topics/geneticSelection/agnesF.htm)

www.uvm.edu/~cdci/McPh_&_Sobsey.pdf [I thought I had coined the concept of "disability ethics" myself. :)]

http://portal.unesco.org/shs/en/ev.php-URL_ID=1837&URL_DO=DO_TOPIC&URL_SECTION=201.html (Ethics: UNESCO SHS [Social and Human Sciences])

http://europa.eu.int/comm/european_group_ethics/index_en.htm (European Group on Ethics in Science and New Technologies)

http://www.unhchr.ch/html/menu3/b/72.htm

http://www.laakariliitto.fi/etiikka/laakarinvala.html [The Finnish version of Hippocratic oath. ¿Comprende? ;)]

http://www.disabledparentsnetwork.org.uk/resources/regular_requested_info.htm [READ Reports & Papers]

http://www.stakes.fi/include/incc310.html

http://www.bbc.co.uk/ouch/yourspace/gdbvote.shtml

http://www.answers.com/topic/list-of-persons-with-autism-spectrum-disorders

http://www.amazon.co.uk/exec/obidos/ASIN/1873797257/tiltingatwindmil/202-6643581-8471800

http://www.amazon.co.uk/exec/obidos/ASIN/0415300819/qid=1118948362/sr=1-4/ref=sr_1_8_4/202-6643581-8471800

http://www.huxley.net/


Links connected with savant autism

http://www.autism.org/savant.html [An article about autistic savants by Stephen M. Edelson, Ph.D.]

http://www.wisconsinmedicalsociety.org/savant/faq.cfm (Savant FAQ)


Even more links to come...



SOMEONE FROM FINLAND
« Last Edit: 13/09/2005 17:31:05 by memasa »
 

Offline chris

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Re: Gene testing for geeks
« Reply #10 on: 15/06/2005 19:22:11 »

>>>
We would have lost some of the great men and women of our time if gene tests measuring present normality had existed before. Are we willing to make that sacrifice in the future?
>>>

I'm intrigued to know who these people are, do please tell.

Chris

"I never forget a face, but in your case I'll make an exception"
 - Groucho Marx
 

Offline memasa

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Re: Gene testing for geeks
« Reply #11 on: 15/06/2005 21:55:02 »
This is hypothetical, but assuming that the gene(s?) causing ALS could have been located before the birth of Stephen Hawking, we could have lost him.

I just read that less than 10% of ALS cases are genetic. But I remember Hawking said in one documentary that his condition is genetic.

Just one example...
« Last Edit: 23/06/2005 22:04:24 by memasa »
 

Offline chris

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Re: Gene testing for geeks
« Reply #12 on: 16/06/2005 00:27:08 »
Stephen Hawking hasn't got classical ALS anyway, he doesn't fit the bill for the normal presentation of the condition. It's clearly a very atypical variant of the disease.

Good suggestion though.

Who were the other 'greats' that you had in mind for eugenic wipe out ?

Chris

"I never forget a face, but in your case I'll make an exception"
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Offline memasa

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Re: Gene testing for geeks
« Reply #13 on: 16/06/2005 01:25:27 »
Well, I'll try this one... Supposing the evidence for genetic predisposition for schizophrenia is tenable...

We could have lost

- At least John Nash
- Who knows how many more brilliantly mad geniuses
 

Offline memasa

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Re: Gene testing for geeks
« Reply #14 on: 16/06/2005 20:14:28 »
Genetic predisposition for anything "abnormal"...

SOOO many people......................................
« Last Edit: 17/06/2005 14:32:54 by memasa »
 

Offline memasa

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Re: Gene testing for geeks
« Reply #15 on: 17/06/2005 08:56:48 »
You probably could have wiped out a great number of us Finns (population 5.2 million) by saying: "This embryo has a genetic predisposition for alcoholism."
 

Offline daveshorts

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Re: Gene testing for geeks
« Reply #16 on: 17/06/2005 10:22:47 »
Isn't this one of these questions about balance? If we get rid of all embryos who are slightly odd, you would loose interesting points of view and society would be immensely poorer as a result. However the reason that a large proportion of the population doesn't have a serious genetic disease is that natural selection is allways selecting out genes that don't work (isn't it like 10% of embryos which are naturally aborted anyway because they are not viable). If medicine stops this process a larger and larger proportion of the population will have diseases.

If a significant proportion of the population has a disease as serious as ALS the are simply not enough people to look after them, let alone grow food make things etc.

Where you have to draw the line is partly an economic question - many 'primative' societies that don't have the resources to care for a sick child will commit infanticide on very sickly infants, because if they don't someone else will starve.

Luckly we are not in this situation yet, but at some point in the future we will have to either develop some sort of germline genetic engineering or some sort of filtering process. Although it is possible that technology will bypass this (either by being able to easily solve all the problems or by blowing up the world) before it becomes a major problem...
 

Offline memasa

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Re: Gene testing for geeks
« Reply #17 on: 17/06/2005 12:39:39 »
daveshorts:This would cease to be an economic problem if all disabled were given the chance to be productive! Technological and medical advances that won't remove our identities are very welcome, and I still stress the importance of societal change.
What makes you think physically challenged people wouldn't be able to "grow food, make things etc"? Are we still useless eaters? I guess growing food is much more simpler than child rearing which isn't, in many cases, impossible either.

I refuse to be seen as a burden in this modern society!
« Last Edit: 17/06/2005 17:17:20 by memasa »
 

Offline daveshorts

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Re: Gene testing for geeks
« Reply #18 on: 17/06/2005 15:19:06 »
I am not saying you are a burden (and your disability isn't inherited so it doesn't fall within the scope of this arguement), but I think it is hard to argue that someone who is in a persistant vegitative state isn't a burden on society, so at some degree of disability to usefulness ratio people must consume more than they can produce or the investment in resources in someone to let them work is not justified by what they could produce with this. This is not a problem if the proportion of disabled people is relatively small, but if the proportion becomes large it suddenly becomes a problem..

 If the overall net productivity of society is negative people start starving... We are nowhere near this point and technology may change too quickly for this to be an issue, but you can't just pretend that it isn't an issue in the long run.
 

Offline memasa

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Re: Gene testing for geeks
« Reply #19 on: 17/06/2005 15:35:34 »
daveshort: [...]"Let them work[...]" It isn't justifiable on a large scale to let anyone work because of lower social position. The answer is still societal change for getting the (dis)able(d) to work.

[...]"but if the proportion becomes large it suddenly becomes a problem.. [...]people start starving..."

Yeah, the world needs scapegoats. [}:)] Will the disabled be blamed on causing famine in the developing countries? :D[}:)]


Are all unemployed (unproductive?) people useless? It would be quite propagandist to answer "yes".

I AM NEGATIVELY AMAZED!!!

Continuing....

I really hope I could provide you with an authentic [mathematical] problem from the Nazi era. You'll have to watch a movie called La Vita è bella (1997) aka "Life Is Beautiful". Anyway, the problem goes something like this: "One disabled costs this and this much money, how much would we save if this and this many disabled were killed?"

If the disabled were included in this "modern" society you wouldn't just save money but win money.

Of course it's not the same thing! But... And I'm not implying that you are... *coughing*...


What makes you think the proportion 10 to 100 or 15 to 100 will increase if gene test aren't made? Any scientific evidence?

I'm not saying that gene tests aren't acceptable, though, in some cases.
« Last Edit: 20/06/2005 13:52:51 by memasa »
 

Offline Ultima

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Re: Gene testing for geeks
« Reply #20 on: 17/06/2005 20:42:36 »
quote:
By "Darwinist thinking" I referred to evaluating people by their superficial attributes; survival of the normal.

Don't you mean people who are most successful or “fit”? Disabled people can still have sex and many disabled people prosper and do well. People who cannot have children might still be successful and support their family and in this way improve the chance that some of their genes get passed on.

quote:
Crime statistics are upsetting: according to estimates in USA people with disabilities are four to 10 times more likely to be victimized than people without disabilities.


An example of Darwinism in effect? No! because guess what I bet there will be some disabled person who cares enough and invents a wheel chair with tazors and mace sprays for protection, like what has been done with pimped out cars in South Africa.

quote:
Life is always precious! It's stigmatizing to say any disability would be an indicator of (in)humaneness. Besides, disability hardly ever means total inability. Moreover, disability hardly ever is just a minus, or a sum of minuses.
People with a hearing impairment, for example, view themselves as members of their own culture which shouldn't be destroyed with hearing implants. Even though I'm not hearing impaired myself I think their view should be respected.


Life is always precious. But don’t forget that away from disability we still live in a world where someone’s race, appearance and religion devalues their humanness in some one else’s eyes. Look at America for example right now, a lot of the population believe that most of the world needs “correcting” just because they don’t have a democracy and live in a very different life style not based on accumulating wealth (granted some places are very corrupt). Your hearing impairment is a great example; both sides of the argument are just as bad as each other. One side says this child has the chance for hearing with a little help so we should do it. The other say that’s how they are born and we coped fine and they can be integrated into our lifestyle. Both ignore the fact that a new born child cannot make the choice for themselves. However one choice can't be made later on in life! Cochlear implants are more effective if they are used at an early age since the brain doesn’t “switch off” to sound. If someone later goes oh wait I don’t want to be able to have the ability to hear later on in life im sure that could be easily arranged. The counter argument is that someone who grew up with hearing obviously isn’t going to want to give it up. Stale mate, but why not give someone the chance if it's there? Also if the rest of the family are deaf they argue for keeping the child deaf just because they fear their child will be alienated from them… which I know is crap I had a friend at school who had deaf parents and she just signed around her family and spoke anywhere else.

quote:
This is hypothetical, but assuming that the gene(s?) causing ALS could have been located before the birth of Stephen Hawking, we could have lost him.


Or you could say this person has a genetic disposition for a certain disease and say "Ok if we treat them from an early age they might have a far better quality of life and live longer." Oh no wait im far more likely to want to just kill them being a geneticist???
If I had something like Huntington’s I would want to chose to have a child free of the defective Huntington gene (Using IVF and selecting the zygote, which is a contested topic in the UK), but I could quite easily just choose to not risk anything and have no kids (the "natural" way) oh look now I don't bring any life into the world for the sake of it. Or would you prefer I do bring a child into the world knowing full well that there was a 1:2ish chance that they would have Huntington’s and die an early death in a fairly horrific way. Sure they might do great things in the time they had, or they might crap themselves all life long because they know they are going to die early without one of their parents? This isn’t a contested disease we know that it’s hereditary and also dominant even before we knew how. Oh I know we have a kid don’t tell them about it, we die early. They go on have a load of kids and then they die without knowing why… and so it goes on, or you can stop the trait dead in its tracks in the family line.

I know where you are coming from but everyone including the disabled with the example of deaf people wants children who are “like” them. Its not harsh it’s not bigoted its just human nature. Wanting to prevent a disability from continuing in a family line isn’t writing off a load of people from history BECAUSE THEY DON’T EXIST YET! What if lots of disabled people prevented the disability in their children, then brought them up to fully respect the disabled persons point of view did this through out history, guess what we would have a far more accepting “normal” community. What is your concept of normal and disabled anyway? I see people as people I treat disabled people the same way I would anyone. If I saw a small kid or and old person struggling to open a door I’d help them. I would do the same for someone who is able to open the door its just common decency. Again I would do the same for a disabled person and in this case I could be accused of taking away their individuality and or belittling them? The crazy thing the same goes if I hold a door open for a woman if she is an ott feminist she might think I’m doing this because she is a woman. The world has gone mad! I imagine that soon If I hold the door for someone I have the choice of being a: Paedophile,  Necrophiliac (hmm I doubt this would occur except in a morgue), Homosexual or Chauvinist Pig.

Darwin gets a bad rap; “survival of the fittest” the human fittest are no longer governed by any physical attribute apart from being able to sexually perform.

PEOPLE NEED TO CHILL. There will always be others of varied ability around. Even more so if you introduce genetic engineering, “Harharhar look at Timmy his mum and dad couldn’t afford the new muscle enhancer gene therapy. Look at his puny flailing arms!” Then an exo-skeleton clad disabled person comes along and beats the crap out of the genetic enhanced people. :D What a nice picture of the future.


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Offline Ultima

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Re: Gene testing for geeks
« Reply #21 on: 17/06/2005 21:05:55 »
Woa just getting up to speed on this thread. Daveshorts makes some valid arguments. But as he suggested technology will make this problem go away. Recently there has been a big improvement in direct brain interfacing and some dude in Japan has constructed an exoskeleton to help less mobile people get around. With all of this and neural bipasses being looked at, there is no reason that with mechanical aid physically or mentally disabled, handicapped whatever the PC words are peeps can fruitfully contribute to soceity. Plus the developemeant of cool ass prosthetics like this (which btw im thinking about making my profession) will lead to enhancements for those "normal" people memasa keeps talking about. Granted though really good prosthetics and robotics shown in movies is a long way off, and something like the Matrix way to far off to imagine. Wouldn't it be great if disabled people did become the part of society to get all the neato upgrades this would make them more than valuable to society.

http://www.newscientist.com/channel/mech-tech/mg18624945.800 exoskeleton stuff
http://www.engin.umich.edu/dbi/ direct brain or neural interfaces

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« Last Edit: 17/06/2005 21:21:23 by Ultima »
 

Offline memasa

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Re: Gene testing for geeks
« Reply #22 on: 17/06/2005 23:10:37 »
Ultima:
quote:
[...]"genes get passed on."


Some people with a genetic disease have made the decision not to pass their genes. My friend, for example, who has a genetic disease made that decision as he found about the disease. He already had one daughter, though, who he loves and cares about.
 
Even though I emphasize the ethical aspects of gene testing, I’m not saying it’s wrong. Ethics is about personal choices, moral is a different matter.

quote:
[…]”there will be some disabled person who cares enough and invents a wheel chair with tazors and mace sprays for protection, like what has been done with pimped out cars in South Africa."


The country where I’m living in is not South Africa; our laws prohibit such armament. I’m worried about my safety, yes, but I would never use such force to protect myself.

Addition: In Finland you actually need a gun license if you want to buy a pepper spray. I doubt stun guns, stunners, tasers aren't even legal here in civil use.

quote:
[…]”we still live in a world where someone’s race, appearance and religion devalues their humanness in some one else’s eyes.”


Sad but true! The work for human rights must be continued!

quote:
[…]"hearing impairment is a great example"[…]


I did not take a stand. I spoke about a culture, and respect -- nothing else.

quote:
[…]”One side says […] The other say"[…]


Who’s right, I don’t really know. I understand both sides, though.

quote:
[…]“that’s how they are born and we coped fine and they can be integrated into our lifestyle.”


The child can be integrated into both lifestyles, with or without a hearing implant.

quote:
[…]”a new born child cannot make the choice for themselves”[…]


Likewise, a gene tested embryo doesn’t have the right to choose.

quote:
”Cochlear implants are more effective if they are used at an early age”


True!

quote:
“I had a friend at school who had deaf parents and she just signed around her family and spoke anywhere else.”


GREAT!

quote:
”Oh no wait im far more likely to want to just kill them being a geneticist???”


I hope not!

quote:
”If I had something like Huntington’s I would want to chose to have a child free of the defective Huntington gene (Using IVF and selecting the zygote, which is a contested topic in the UK), but I could quite easily just choose to not risk anything and have no kids (the "natural" way) oh look now I don't bring any life into the world for the sake of it. Or would you prefer I do bring a child into the world knowing full well that there was a 1:2ish chance that they would have Huntington’s and die an early death in a fairly horrific way. Sure they might do great things in the time they had, or they might crap themselves all life long because they know they are going to die early without one of their parents? This isn’t a contested disease we know that it’s hereditary and also dominant even before we knew how. Oh I know we have a kid don’t tell them about it, we die early. They go on have a load of kids and then they die without knowing why… and so it goes on, or you can stop the trait dead in its tracks in the family line.”


This might be one of those things that I could perhaps “filter”. But still it would be contradictory… I had a couple of friends who died in their twenties because of a genetic disease… It was nice to know them: REST IN PEACE!

quote:
”I know where you are coming from but everyone including the disabled with the example of deaf people wants children who are “like” them.”


I can only speak for myself. I DON’T WANT A CHILD LIKE ME, BUT IF I HAPPENED TO HAVE A CHILD LIKE ME, THAT WOULDN’T BE A PROBLEM.
Of course, in the beginning it would be a crisis for me, too, to have disabled child. But a crisis to overcome!

quote:
“What is your concept of normal and disabled anyway?”


Normal = Normal people
Disabled = Normal people

Some people just don’t see it that way. So there’s still work to be done!

quote:
“If I saw a small kid or and old person struggling to open a door I’d help them. […] Again I would do the same for a disabled person […] I could be accused of taking away their individuality”


That’s good. I wouldn’t be offended if you opened a door for me.

The reason why disabled people “accuse” other people of helping them is because sometimes we get overpatronized. I apolologize on behalf of everybody.

quote:
”The world has gone mad!”


I agree!

quote:
[…]"new muscle enhancer gene therapy[…]"


Would you allow that if they had the money?

quote:
”Then an exo-skeleton clad disabled person comes along and beats the crap out of the genetic enhanced people.  What a nice picture of the future."


Not nice at all!

quote:
[…]”technology will make this problem go away.”


I haven’t looked at the links yet. But thanx anyway.
« Last Edit: 21/06/2005 12:28:13 by memasa »
 

Offline Ultima

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Re: Gene testing for geeks
« Reply #23 on: 18/06/2005 15:01:11 »
quote:
Likewise, a gene tested embryo doesn’t have the right to choose.

A fertilised egg or zygote is not an embryo and shouldn't be thought of in any sense as a separate human life, at least not in my eyes! I have no qualms about eradicating bacteria on a mass scale, how is discarding a fertilised egg any different? Many zygotes are discarded naturally if they are not viable, in nature. If you say that a zygote has the ability to become a separate human life that’s a fair comment; but so does all the sperm wasted across the globe when masturbating, or eggs when a woman has a period (no conscious control involved there) hmm I really do worry about the moral social implications of wasting all that sperm and those eggs!

Yup I would allow gene therapy personally, but in a controlled way so that it can be easily removed later on, such as with adding a fake artificial extra chromosome. No need to worry about it yet though since we are far from understanding how all genes’ interact and work together. I think genetically modifying simple bacteria, viruses and plants is very beneficial and should be studied now. Plants are a bit of a risk, but viruses and some bacteria are simple enough to almost be fully understood. In humans where I said that it would be pricey and cause inequality. That is so unless you give just one generation the modifications. Then it doesn’t matter since it will get passed on. Could have collaborative patches or updates :) using retroviruses which I’m trying to discuss in another thread to transmit the “upgrades” from person to person.

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« Last Edit: 18/06/2005 15:06:53 by Ultima »
 

Offline memasa

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Re: Gene testing for geeks
« Reply #24 on: 18/06/2005 18:44:32 »
Ultima: I would have said: "A zygote has the ability to become a separate human life.", if you hadn't already said that. :)

But I'm not too worried about where my sperm goes -- unless I'm trying to impregnate, or draw a smiley on the toilet mirror. :)) ...I really haven't tried to draw.

Back to the subject: when does a human life begin, is a deeply philosophical question. For some it's a religious question -- which is why some people don't "waste" (at least they won't tell about it!) their sperm/eggs, or don't let a raped woman abort the pregnancy. ...I don't understand that! (My Dutch friend, living in Finland, told me about one such rape case in her home country -- how sad :( ).

quote:
"[...]but in a controlled way[...]"


Yes, control is what I'm demanding, including democratic decision-making. Also, I can't overemphasize the importance of considering/consulting/respecting the views of different disability groups, and those close to them, in shaping the future of gene technology. Disabled people are the targets of genetic engineering/gene testing by default.

I'm just afraid (like many others) that with this pace the geneticists/embryonists, whatever their titles are, forget about moral and the possible negative effects on society as a whole. $$$$$ talks and ******** walks, you know.
Genetic engineering can do a lot of good as well, but the fears of the target groups aren't totally without base. And it's not just some disabled people who are worried, there are others, too.

Take a look at the pdf file (the 2nd link on the list) I just added. I'm not the one defaming everything: some of the harbingers of change do it themselves!
I'm actually quite a positive personality. But perhaps after reading that article, you'll all realize why even the most positive person can blow one's top.
This just makes me wonder if some mother*******s have a moral or social responsibility to forget, it seems naive to think so. [Insert an infinite number of sad smilies here!] Which brings us back to human dignity and human rights -- and defining the nature of democracy.

Democracy

5 : the absence of hereditary or arbitrary class distinctions or privileges (www.m-w.com)

quote:
[...]give just one generation the modifications.


Perhaps a good idea, presupposing it won't get out of hand! But hard to fulfil on the scale of the whole world.


Defining "survival of the normal"

Excuse me, if I was illogical before. I know what Darwinism really means. By "survival of the normal" I referred to the FALSE beliefs/myths some people classified as able still have about disability (in no particular order):

- Disability is a cause of the sins of the fathers
- The quality of life of those classified as disabled is automatically noncomparable with the quality of life of those classified as able
- Nobody likes a "wise-ass" <---> a "wise-ass" likes nobody, perhaps not even himself/herself/hirself
- All classified as disabled are unproductive: hereby an instabilizing minus in the balance sheet
- Those classified as disabled are one homogenous group (i.e. stereotyping)
- Those classified as genetically disabled are a serious health risk that endangers the future of all humankind.

The supposed poorer quality of life, "wise-assness", unproductiveness and the health hazard permit the nonexistence of those classified as disabled, and thus the constructed class of normality survives.
As time goes by, perhaps only a few people will see their current spick-and-span society as a construction that can, could or should be undone. A tradition justifies it.

I hope I didn't present a dogma of the future! What a sinister picture. Hmmm, I wonder if I just coined a new concept. Or is it just an old concept with a new name...


"Life is like a box chocolates, you never know what yer gonna get."
Forrest Gump (Tom Hanks)
« Last Edit: 23/06/2005 21:46:29 by memasa »
 

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Re: Gene testing for geeks
« Reply #24 on: 18/06/2005 18:44:32 »

 

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