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View Full Version : Question for those of you in Europe (heath related)



NathanAllan
August 15th, 2006, 01:23 AM
Here in the US there's a big stigma about any kind of genetic research being looked at as "playing god," and I was wondering if it's the same over there? Every now and again I'll hear some news bit about some kind of experiment with genetics and it really helped someone.

I don't know how anyone feels about it here(this forum), but adult stem cell research is very promising, and the stigma totally goes away when you have a loved one that could really be helped by it.

My wife has a genetic trait that causes her immune system to destroy her cartilage and connective tissue. For us in the US, that means hip replacement, which is only temporary, for about 20 years. That's okay for an older person whose life expectancy is lower, someone in their 70's or 80's but my wife is 34, and we don't want her leg to go NECROTIC in 20 years or less (due to the genetic trait) and possibly lose the leg.

She needs not a new hip but the cartilage and tissue in the ball and socket joint of the hip. The bones themselves are fine, but touching and HURTING. Hip replacement would stop the pain but also limit her range of movement drastically.

So are there any practices that my wife can particiate in over there? I'm willing to drop everything and fly over there with her. I can answer specifics about her condition easily. But this is rediculous.

Nathan

carlsson
August 15th, 2006, 08:32 AM
Certainly some people here are strongly against genetic and stem cell research. Personally, I'm basically for research as long as the results are not misused. If plants enhanced with individual genes from a fish results in higher crops and no obvious side effects, I don't think it is more dangerous than traditional cultivation and breeding certain species with the right properties. As time passes, more and more will be discovered how the genes relate to eachother. The only fear I have is if the research falls into "wrong" hands.

Back to your main question, I thought the US was more ahead on stem cell research than most European countries, but maybe it depends on who's in charge of the country. Otherwise, I've heard the Chinese are very advanced in their research. Where I live, there is a little boy that has some disease that would break down his brain and kill him before he gets to school age. His parents collected money from all kinds of places and last year took him to a Chinese hospital specialized in stem cell research, where they gave him a treatment. They flew over there again this year for a new treatment and discovered that his condition is the same as last year rather than much worse as was predicted. Actually, they could measure a bit of improvement in his motor skills or speech. Scientists over here follow this with great interest, but there is no money or resources to do similar research locally. It will cost a lot of money to go once a year to China, but his parents are determined to do anything they can to at least keep him alive as long as possible, even if he would never be fully cured.

NathanAllan
August 28th, 2006, 09:36 AM
I have asked all of her doctors and none of them want to even adress the issue of any kind of stem cell or genetic research. What they do recommend is hip replacement, which is not an option, see above.

Since it's not life threatening, I don't think yearly trips to China would be necessary but I'm not discounting it altogether. If nothign else, they have great alternative medicines there.

Adult stem cell research is also promising but I can't get anyone to tell us where or any kind of details. She is in a lot of pain because of this, and I am very driven to get any kind of info possible. Adult stem cells are found in bone marrow and can be used much the same way as embryonic ones. True, based on my reading the embryonic ones are better but we're not talking about whole organs, just cells on the ball joint of her hip.

This is a very in-depth subject. I'm still learning.

A while back, I heard of some European country cloning a whole person, does anyone remember this story? I heard it on a radio show here, about a child that was cloned of the woman donating and she was raising her. The 'mother' reported that the child was nothing like her, that she screamed a lot and was a little terror. Anyone remember this??

carlsson
August 28th, 2006, 11:45 AM
I suppose even with everybody's arms fully open to stem cell research, it would not be a matter of weeks to cure your wife. More likely years, unless there already exists a process ready to perform only if the law allows it. Last week I heard some new research methods where it would be enough to start with one embryonic stem cell and generate more cells from that one. It somewhat weakens the arguments against the method, unless you consider that particular one embryo could've become a human if not used for science.

I vaguely remember the story on someone illegally cloning a human - was it in France? It is almost humorous when people blindly believe exact personality is engraved in the genetic code. Maybe it works that way in horror movies.

NathanAllan
August 29th, 2006, 09:27 PM
Okay, maybe not stem cell research but gene therapy. What my wife has, at it's core, is a genetic trait, not really a disease.

"My wife has a genetic trait that causes her immune system to destroy her cartilage and connective tissue."

So if stem cells are out, which they are here then I believe that gene therapy is an idea to consider. I asked her doctor again and he pretty much dismissed the idea, as if I were a child. I guess it's the same with doctors over in your nieghborhood, Carlsson?

I think you're right, it only happens in horror movies and Star Wars.

carlsson
August 30th, 2006, 05:31 AM
I don't know what gene therapy means. Pico-laser beams shooting at the cells at DNA level? Introducing aggressive proteins to change the ribonucleus acids that the DNA is made up of, and fool the body to start producing new cells with the modified DNA? I have no idea what kind of such treatments are done over here, and I really don't have anyone to ask about it either. I suppose the key point is to know her genetic code, break it down into the 46 chromosomes (or is it 23 pairs?) and know which one needs to be altered to prevent the immune system from breaking down her cartilage. As far as I know, only a fraction of the human DNA is fully researched. Of course you could argue for more funds to genetic research, but for what I know, they might at random try to change the genetic code in your wife's hips. Maybe it will break down the tissue even more aggressively, maybe it will cause great pain, maybe it will work out fine. This is written in the view of a complete layman.

NathanAllan
August 30th, 2006, 06:05 AM
I believe we have found a vaible alternative to hip replacement-- hip resurfacing! It's similar but only the actual ball and socket are replaced, and there is no necrosis after a study of people who had it done 12 years ago. This doesn't stop the genetic problem, but it gives her a chance to live without pain.

As far as I know, gene therapy is a drug made from a patient's own dna, modified to where the docs want it to be, and given to the patient to actually modify the genetic code. Very fascinating stuff! It's practically its own language (we can realte here). And that's just one small explanation, there are lots of other options. And lots of side effects since we are just discovering it, relatively speaking.

The part of the genome that has been mapped I believe is the non-junk DNA (junk dna being the parts that seem to do nothing according to docs) but yes, it is largely unknown.

There's hope on the horizon with the hip resurfacing, but the genetic stuff is far out for us, still. There will be other things happenin te future but I guess we'll have to deal with that when it comes around.

As much research as I have done, and all night long reading, I am still in the dark about 99% of it. Layman? That makes two of us :)

chuckcmagee
August 30th, 2006, 06:22 AM
In gene therapy, they try to get the "good genes" inserted into the person's cells, in order to produce a missing protein needed for proper functioning. The only method I had heard about was putting the good genes into certain viruses, then using the virus to insert the new gene into the person's cells. They have other methods now that I haven't read about yet. Anyway, gene therapy hasn't been very successful so far. Gene functions are not really understood well enough yet. Sometimes they will get a good effect early only to have some strange disease popup later.

carlsson
August 30th, 2006, 02:23 PM
Yeah, I suppose the difficult part is to know which genes are "good" and in which context of other genes. For some problems, maybe it is easier to find - or rather know from other person's samples - which bit of the puzzle needs to be altered.

I have a 1200+ page course book on college level biology, and it of course goes into DNA as well as a lot else:


Since a haploid set of human chromosomes contains approximately 3 billion nucleotide pairs, this is potentially the most time-consuming part of the project. (to map the human genome)

Good luck with the hip resurfacing. It's hip to be square!