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Tue 6 Jan, 2004 04:57 am
I won't go into all the technical details I did the first time.
Cystic fibrosis is genetic in origin. There's a considerable amount of work looking at trying to beat the disease. It tends to be somewhat self limiting due to the fact that sufferers rarely live long enough to have children themselves.
So lets imagine that an effective treatment, but NOT a cure, is found that would allow the sufferers to live much longer. The likely effect would be an increase in the amount of people who would actually need the treatment. Would be a great profit maker for whatever company discovered it. It's probably also fair to say that it would be a genetic weakening of the human race.
Would it be wise to use? To create a situation where the presence of a disease in society increases dramatically. It's not hard to get emotional on the subject, since all the sufferers are young. I'm sure if a close family member was a sufferer, as is the case with some members here, the answer would be yes. Someone who's remote from the situation may have a different view. I don't know what the right answer is, but it was something my biology professor (who is part of research for a cure) raised as one of the ethical considerations.
I'm hoping that people much smarter than me, and are able to analyse a situation better than I can, will discuss it. It may open some wounds. As I said, I don't know what the correct answer is, or even if there is one. But as work in genetics advances, it's very possible that questions such as this may become more common.
I lost a step sister to CF.
Also, Mrs. SealPoet once worked with a young woman in her mid-twenties with CF (no word on what happened to her.)
Life itself is passed on genetically, and is invariably fatal. Now, what was the question?
Re: Sixty Five Roses
Wilso wrote:Would it be prudent to take action that would result in the genetic weakening of the human race?
You frame this as a
prudential problem? Why? Whose "prudence" are we talking about here?
For ****'s sake. I didn't create the disease, and I won't make any decisions. I was just wanted to see what smarter people than me thought. I'm sorry I asked. God forbid that I try to start a discussion on a discussion forum.
What on earth is going on here? A tanty of some sort, it seems?
I assume cystic fibrosis is being discussed?
My sister died of it, so I have an interest in such a discussion, should it resume.
Wilso, the subject you raised is worth discussing. I questioned the way that you framed it, but that (I think) is worth discussing as well. On the other hand, if you merely wanted people to agree with you, then you were right to delete the original post.
It sounds like an interesting thread. Wilso, would you please recontruct it? Thanks!
joefromchicago wrote:Wilso, the subject you raised is worth discussing. I questioned the way that you framed it, but that (I think) is worth discussing as well. On the other hand, if you merely wanted people to agree with you, then you were right to delete the original post.
It would be very difficult for anyone to agree with me, SINCE I DIDN'T EXPRESS AN OPINION IN THE FIRST PLACE. I just wanted to invoke discussion. As I said, I'm sorry I tried.
Wilso wrote:It would be very difficult for anyone to agree with me, SINCE I DIDN'T EXPRESS AN OPINION IN THE FIRST PLACE. I just wanted to invoke discussion. As I said, I'm sorry I tried.
imho, you did make it clear that it was a quote. But perhaps you should have made it clearer.
My first post would have been the same anyway. What the origianl speaker was suggesting was at best 'A Modest Proposal', but not very Swift.
On the other hand...
what IS your opinion, Wilso?
SealPoet wrote:On the other hand...
what IS your opinion, Wilso?
I don't know what the right answer is on the situation. IT's somewhat hypothetical. My biology professor at the time just raised it as an example of the sort of dilemnas that may arise as work in genetics progresses.
OK Deb. Give me a couple of minutes.
LOL!
I do not see a logical problem - if people behaved logically!
When I was in my peak reproductive years, there was no test to see if you carried the disease. Th eman I was most likely to want children with had, we discovered when we discussed it, also had a sibling who died of the illness (my sister did, as people may read above). Since we both had a 2 in 3 chance of being carriers, we never even considered going ahead with children - and, given the common-ness of the thing, this put me off. I would never have considered the possibility of passing this thing on, having seen the suffering it causes.
If people who had it ensured that any children they might have could not have it (it is recessive - and partners can now be tested) - fine.
I see this as a separate issue from effective treatment. If that were discovered, wow!
Thing is - some people's need to have kids overcomes all logic and thoughts of possible disability - I guess they argue that disabled people are as valuable as anyone else - and so they are - I would just never inflict suffering knowingly on a child of mine.
IF the disease were effectively treatable, though, would it still be a disease, and "weakening"? Is myopia a disease? Is it weakening us?
Hmmmm - well, I probably carry myopia and deafness - and, possibly, the gene making breast cancer almost inevitable - these combined added to my reluctance to have kids. Good choice? Dunno.
It is the choice I made. But then, I had no intense biological clock thing happening. Dunno if this was the cause, or the result, of the logical process I went through...
Wilso- OK, I think I have got it. Science reaches a point where there are treatments, but not cures, for genetic diseases. Therefore, people who heretofore may have died in childhood, now live and reproduce.
Your thesis appears to me as to whether a scenario like the one I have mentioned above would ultimately weaken the gene pool.
Is that right?
I think that genetic technology is advancing at warp speed (if not slowed down to a crawl by politicians with their personal religious agendas). Ultimately, I think that now that science can get directly into the gene, it is a matter of time until many of these genetic diseases will be cured through genetic manipulation, possibly in utero.
That's about the size of it.
Let's hypothesise that that the existence of such a treatment DOES weaken the gene pool. Should it be used regardless of that effect?
Deb mentions above that at the time she was of child bearing age there was no test to determine if you were a carrier.
Does anyone know if there is one now? It wasn't mentioned in my classes, while some tests were.
The feeling I got in my lectures was that germ line therapy could be very effective, but it's illegal in most places.
I believe there is, Wilso.
What is germ line therapy?
Wilso - I feel a similar way about feeding starving children. You send money to a starving child, they grow up and have more children, who will feed their children? Won't that create more starving children in the long run?
That's why I'm a big proponent of the "If you teach a child to fish" method, in which people with pathos use their goodwill in an effective manner, sort of like that leasing a cow to a village program.
With cystic fibrosis, if there was a way to live longer and children were had, and if those children could make enough money to get food and treatment, then good for them and more power to em'. If they are dependent on a socialist-based welfare society in which others would be made to pay for the drugs, then it would be unfair (but that would be the result of politics, not the drugs themselves.)
If society crashes and there is no medicine available, it would wipe out such a populus as well as many other members of the population.
And is cyctic fibrosis a dominant gene? It may not neccessarily be expressed in all cases.