Designer BABIES !!!
- Thread starter jimmoyer
- Start date
Here are some examples of conditions I would screen out if I could. Please don't look if you are easily disturbed by graphic photos. There are the type of babies I sometimes see at work. If there is a way to avoid their suffering, I would take it. If you had those conditions in your family and felt differently, that's for you to decide. I would just ask for the same right without being compared to a nazi.
Harlequin ichthyosis is an example. If you can look at this picture and say you wouldn't screen for it if you could and avoid giving birth to that child, I don't understand you at all. I've looked after one baby with this condition.
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijd/vol1n1/harlequin.xml
I would also encourage you to consider conditions like Tay-Sach's disease, Trisomy 13, Junctional Epidermolysis Bullosa, Batten Disease, Cystic Fibrosis, Progeria... the list goes on. Most of them are fatal.
Harlequin ichthyosis is an example. If you can look at this picture and say you wouldn't screen for it if you could and avoid giving birth to that child, I don't understand you at all. I've looked after one baby with this condition.
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijd/vol1n1/harlequin.xml
I would also encourage you to consider conditions like Tay-Sach's disease, Trisomy 13, Junctional Epidermolysis Bullosa, Batten Disease, Cystic Fibrosis, Progeria... the list goes on. Most of them are fatal.
Hermann - if you are in Edmonton
There are a group of scientists/docs who are doing some experimenting with islet cell transplants.. in your home town....they must have a diabetes support group too for information referral.
If there is any work being done in that city ... there should be some very knowledgable people available to you.
My nephew lives there and he wrote me last fall about some good news and work being done there... we are always looking out for breakthroughs in diabetes in our family just in case...
OOOPs - sorry Hermann I just read you are done with the topic of diabetes...I'll delete it if you want me to...
There are a group of scientists/docs who are doing some experimenting with islet cell transplants.. in your home town....they must have a diabetes support group too for information referral.
If there is any work being done in that city ... there should be some very knowledgable people available to you.
My nephew lives there and he wrote me last fall about some good news and work being done there... we are always looking out for breakthroughs in diabetes in our family just in case...
OOOPs - sorry Hermann I just read you are done with the topic of diabetes...I'll delete it if you want me to...
And that's fine for you. I've worked with families who have chosen to risk it rather than screen. Sometimes it works out well and sometimes it doesn't. I've seen both. I'd only ask for the right to make that decision for myself too. No one is talking about forcing anyone to use genetic screening.
Geeeeeeez! That's as grim as some of the crap I've seen as a firefighter. Definitely room for allowing GM or screening there.
That's my only point. I don't understand how anyone would knowingly risk having a child with that condition if it could be avoided. Like most really horrible genetic conditions, it is very rare. But, those rare couples deserve the right to screen for healthy embryos before implanting them IMO.
Ditto! You know all about my little man (my nephew) His mom and dad worked 8 years to get him and wouldnt change a thing. He and You are great joys in my life. Please dont make me nag you
fair enough I think harlequin icthyosis (OMG how awful) would be on all our lists as one that should be screened if possible. BUT when it comes to something less severe, who gets to choose? who says this is ok and this isnt? If i were a maladjusted diabetic and still believed (as i once did) that my condition was one that should be avoided at all costs and was a curse and an evil pestilence all who succumb to it, I'd be screening babies. If I were even more maladjusted I might think that blondeness was a disease, or that left-handedness was, or that asthma should be screened for... you see? the lines are hard to draw, and there's a lot of possible tragedy for those who decide the lines will draw themselves naturally.
Im very certain if my mother knew I was bipolar and the ramifications of it she would never have had me. My point being if you test for one disease and not others who makes that choice? And if you test do you disclose ALL the diseases that child is predisposed to or just a certaion list......sorry but it all makes me a bit leary.
If any of these ran in a family, I definitely wouldn't stand in judgement of in vitro screening. But they're all great examples of why GM would be such a wonderful alternative, especially if it could be done in utero. I can't look at that baby and think "Gee I wish someone had kept him from being born" rather I think "Damn I wish we could cure him"
that all depends on the risks. I'm not familiar with the theory but you can be damned sure I'd learn everything i could before even considering it. Certainly if there was a low-risk way of preventing diabetes i'd take it.
I don't believe you can screen for diabetes because it's multifactorial though I'm not certain on that. So are a lot of conditions.
It's easy to make laws and professional standards to stop genetic engineering (meaning picking blondness or right handedness) and still allow screening for severe diseases. I don't think it's right to force a family to risk having a baby with HI or go childless because we're concerned about a hypothetical. I might feel differently if I was more detached, but I'm not. Regulate it, don't ban it.
That sort of thing has been done in many areas of medicine btw. There are a lot of morally iffy situations. We don't shy away from them because of the slippery slope argument. A perfect example is the debate that occured over when we can discontinue life support. There is no hard and fast rule, but there are standards and guidelines. I wouldn't take that ability away from one family because of a concern that another family might want to use it unethically.
Yeah... risk is key in all things. With ankylosing spondylitis and a host of other arthritic conditions running in our family, if I could find a way to prevent it in my kids (especially my son, as males tend to manifest it much more severely), with a minimum of risk, then I'd definitely take it.
you make a good point. I suppose it wouldnt take long to set up a list of screenable conditions.
Btw you couldnt screen directly for diabetes of all kinds, but you could screen for the weakness to type 1, and generally if you have the weakness you get the condition, since it's known as juvenile onset diabetes, the trigger (whatever it is) is so common that it's very rare to find an adult getting type 1
Btw you couldnt screen directly for diabetes of all kinds, but you could screen for the weakness to type 1, and generally if you have the weakness you get the condition, since it's known as juvenile onset diabetes, the trigger (whatever it is) is so common that it's very rare to find an adult getting type 1
I may be a bit sensitive to this, but I hope you're not implying I don't care about those babies or that I care less because I believe in genetic screening. I'm one of the people looking after these babies until they die, trying to keep them comfortable and tend to their grieving parents. OF COURSE I wish we could cure them. I'd give anything for that. But we can't. There are some things we just can't fix with all our machines and drugs and surgeries. That's just the reality I live with. Knowing that, I am in favor of genetic screening. You realize too, don't you, that most of those rare diseases will never be cured? They are too rare to really invest in. And even if someone did, those first children would basically have to be used as guinea pigs in the quest for a cure. I wouldn't let anyone do that to my child.
Well, what I said in my first sentence was quite key.... "If any of these ran in families, I wouldn't stand in judgement of in vitro screening". I get how hard it is to work in these sorts of situations, and how exhausting it must be to see the pain associated with it. It just doesn't change the way I would deal with the issue within my personal life. I apologize for trying to stay fairly on topic with the original post, but, my only comment was that genetic screening isn't an option for me, and so genetic therapy is an exciting alternative if it were ever to truly materialize. And, if it was to become a reality, then in theory, any gene they can isolate to screen for should be able to be isolated for treatment as well, regardless of how common or how rare it was.
So, given the chance, would you be in favor of genetic therapy for these children, instead of screening ahead of time?
What I said in my post was pretty clear I thought. OF COURSE I wish we could cure them. In theory, it's great. Today we can't though. In the absence of that I think the best option is screening. I wouldn't knowingly risk having a baby like that. Would you?
I probably wouldn't have kids if there was a significant percentage risk that my baby would be born like that no. Adoption would be much more practical.
I used to be sure of that too. I'm very pro-adoption, being adopted myself. It's just that I also see how hard that can be.