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I'm not really following this article: what "questions remain", exactly? The child is better with the procedure than without, no? What exactly is the alternativ

by tabeth 10y ago

I'm not really following this article: what "questions remain", exactly? The child is better with the procedure than without, no? What exactly is the alternative that would leave no questions remaining? --- To add, I guess I understand the questions, but rather am struggling with the distinction between this procedure specifically, and the outcomes when any child is born, generally.

nxc18 10y ago
The question is about whether the child will develop symptoms later in life, as the defective DNA was not 100% removed. The larger questions around issues like these is whether or not the fix will last. Solving a problem 90% can actually have pretty bad consequences; If you solve a problem that causes infertility or early death only temporarily, you could create a child that grows to adulthood only to have life cut short. Would this process still be a good thing if the child died at 10 years rather than 3? 15? 20? Questions remain because we actually have no idea how this is going to play out. I'm with you, this is probably a good thing, but it will be many years before we know for sure.
- Mz 10y ago
  The question is about whether the child will develop symptoms later in life, as the defective DNA was not 100% removed. If he does not die by age 3, it is an improvement. Duh.
  - Teever 10y ago
    So if the child lives to age 53, but after age three it is a life full of agony and tremendous burden to society that's an improvement in your book?
    - Mz 10y ago
      You know, I have a form of Cystic Fibrosis. I was diagnosed late in life and I get accused of being insane and making shit up for talking about getting myself well. I would literally commit suicide if I thought my future was as hopeless as what doctor's promise you for Cystic Fibrosis. Yet, I have been on email lists where parents said very touching things like "My son turned 18 today. Today, the life expectancy is age 36. When he was born, it was 18." And I have talked to people who have had double lung transplants -- a thing I have no desire to go through and the idea of being listed fills me with horror because you basically wait for someone young and healthy to die tragically young in an accident so that you might live -- and they describe the agony they have been through and say they would do it all again and have no regrets. The parents wanted this child. Their two previous children died by age 3 due to the genetic disorder the mother carries. It seems they felt it was better. Who the hell are you to judge?
jfaucett 10y ago
This link list most of the open questions: http://www.rbmojournal.com/article/S1472-6483(17)30078-0/fulltext http://www.rbmojournal.com/article/S1472-6483(17)30078-0/ful..., looks like mainly some clinical work and also ethical grounds due to legality etc.
Mz 10y ago
Yes, the child is better with the procedure than without. The "questions" that "remain" are basically people who don't have to live with dire genetic defects being perfectionistic asshats. This frequently screws people over who do have serious genetic disorders or even non-genetic but life-threatening conditions. It is not uncommon for a new drug to fail to get through FDA approval because of concerns over side effects under conditions where the people being denied the drug are going "AAAUGH!!! Let me live long enough to have to worry about your silly side effects!!!!!" They have yet to work out really good rubrics for this stuff.
- laythea 10y ago
  It would be foolhardy for humanity to have confidence in something it knows nothing about. There are some areas which should never be touched, and this is one of them. I don't mean to sound heartless to those who suffer (parents too) however you come across, to me, like there is a solution. There is not, and at best we can experiment with nature and see what happens. When the "experiment with nature" gets to this level its time to stop, for the betterment of humanity as a whole, not the individuals own good. And, yes. I would be saying entirely the opposite thing, if, for example I was personally in a situation where this may benefit me or my family. Even though I would be saying that as an individual, it does not change the fact that it would not be better for humanity, as a whole. At that point, I would be consumed by my individual, to not care about the effect on humanity, as a whole. This classic battle between the good of the individual and the good of the group can be seen in many areas of nature, and this is another example.
  - x1798DE 10y ago
    What does this have to do with the good of the whole? I'm not going to catch a genetic disease from you. I'm not going to catch side effects from a medication you are taking. Seems to me that the risk is entirely borne by the individuals.
  - jpttsn 10y ago
    Why assume that you, as an individual, can have any idea of what's good or bad for the group? Is the group here to serve your individual agenda?

by tabeth 10y ago

nxc18 10y ago

The question is about whether the child will develop symptoms later in life, as the defective DNA was not 100% removed. The larger questions around issues like these is whether or not the fix will last. Solving a problem 90% can actually have pretty bad consequences; If you solve a problem that causes infertility or early death only temporarily, you could create a child that grows to adulthood only to have life cut short. Would this process still be a good thing if the child died at 10 years rather than 3? 15? 20? Questions remain because we actually have no idea how this is going to play out. I'm with you, this is probably a good thing, but it will be many years before we know for sure.

Mz 10y ago
The question is about whether the child will develop symptoms later in life, as the defective DNA was not 100% removed. If he does not die by age 3, it is an improvement. Duh.
- Teever 10y ago
  So if the child lives to age 53, but after age three it is a life full of agony and tremendous burden to society that's an improvement in your book?
  - Mz 10y ago
    You know, I have a form of Cystic Fibrosis. I was diagnosed late in life and I get accused of being insane and making shit up for talking about getting myself well. I would literally commit suicide if I thought my future was as hopeless as what doctor's promise you for Cystic Fibrosis. Yet, I have been on email lists where parents said very touching things like "My son turned 18 today. Today, the life expectancy is age 36. When he was born, it was 18." And I have talked to people who have had double lung transplants -- a thing I have no desire to go through and the idea of being listed fills me with horror because you basically wait for someone young and healthy to die tragically young in an accident so that you might live -- and they describe the agony they have been through and say they would do it all again and have no regrets. The parents wanted this child. Their two previous children died by age 3 due to the genetic disorder the mother carries. It seems they felt it was better. Who the hell are you to judge?

jfaucett 10y ago

This link list most of the open questions: http://www.rbmojournal.com/article/S1472-6483(17)30078-0/fulltext http://www.rbmojournal.com/article/S1472-6483(17)30078-0/ful..., looks like mainly some clinical work and also ethical grounds due to legality etc.

Mz 10y ago

Yes, the child is better with the procedure than without. The "questions" that "remain" are basically people who don't have to live with dire genetic defects being perfectionistic asshats. This frequently screws people over who do have serious genetic disorders or even non-genetic but life-threatening conditions. It is not uncommon for a new drug to fail to get through FDA approval because of concerns over side effects under conditions where the people being denied the drug are going "AAAUGH!!! Let me live long enough to have to worry about your silly side effects!!!!!" They have yet to work out really good rubrics for this stuff.

laythea 10y ago
It would be foolhardy for humanity to have confidence in something it knows nothing about. There are some areas which should never be touched, and this is one of them. I don't mean to sound heartless to those who suffer (parents too) however you come across, to me, like there is a solution. There is not, and at best we can experiment with nature and see what happens. When the "experiment with nature" gets to this level its time to stop, for the betterment of humanity as a whole, not the individuals own good. And, yes. I would be saying entirely the opposite thing, if, for example I was personally in a situation where this may benefit me or my family. Even though I would be saying that as an individual, it does not change the fact that it would not be better for humanity, as a whole. At that point, I would be consumed by my individual, to not care about the effect on humanity, as a whole. This classic battle between the good of the individual and the good of the group can be seen in many areas of nature, and this is another example.
- x1798DE 10y ago
  What does this have to do with the good of the whole? I'm not going to catch a genetic disease from you. I'm not going to catch side effects from a medication you are taking. Seems to me that the risk is entirely borne by the individuals.
- jpttsn 10y ago
  Why assume that you, as an individual, can have any idea of what's good or bad for the group? Is the group here to serve your individual agenda?