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?
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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.
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.
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?
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.
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.
The good of the individual and the good of the whole are not always in conflict. But these discussions where people try to say that someone with a known genetic disorder should not be allowed to do anything like this so that they can both have a baby and try to somehow give the baby a better outcome always smack of Arian Race bullshit to me.
I did not know I had a genetic disorder when I had kids, so I never had to wrestle with such questions. But I have seen other parents wrestle with them.
The bullshit statements you see about concerns that this child will be permanently fucked up for life are just prejudice. Every pregnancy comes with that risk. In fact, I have read that up to half of all pregnancies miscarry before the woman knows she is pregnant and the theory is these are genetic monsters so screwed up they aren't viable.
Elsewhere in this discussion someone rebutted something I said with something like "what if the child lives to age 53 but is in agony and a burden to society?" I have paid accident claims. To my horror, I have read reports of children maimed for life because of parents being, imo, inadequately attentive to safety. So, a child can be born with no genetic defect and end up missing a leg, blind or paralyzed due to parental neglect.
You are telling me that parents with "the wrong genes" should be wholesale denied reproductive rights because their kids might suffer, but assholes with no sense can have all the damn kids they like because what fucks over their kids permanently is not part of their DNA. And my feeling on that is [redacted, because it no doubt breaks the guidelines].
Its like your favorite color, in that there is no "right" answer, and it all depends on your perspective and person. I tried to illustrate that, by giving you an example of an "if it were" me scenario.
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.
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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.