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Originally Posted by abbey4u Hi Everyone,
I am due soon to become proud father of my second baby (Just a few weeks away). ...
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Dear Abbey many congratulations to you and your wife (or husband) !
I thought about the same thing almost 2 yrs ago and did a lot of search and do have something to add here, though Amit_arya beat me to it.
Anyway, let me take Amit's post (I agree to most of it) to put my comments:
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Originally Posted by amit_arya ...
1-> none of the facilities are proven and give long term gurantees
2-> search online, consumer complaints..
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aboslutely true espcially in Indian context. Simplest of mistakes (not maintaining a cold chain to the facility or a prolonged power failure) can render the samples useless, even if they were useful in the first place - and this is a big question-mark.
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Originally Posted by amit_arya and a few things, that a doctor (in relation) we knocked our door for his advise.
1-> if this is such a good thing why doesn't govenment publicize it.
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Actually the NHS in UK does it by default for all babies born there. However that is not for the benefit of your baby or even anybody in your family - the samples go into a stem-cell-bank from where anybody in UK can get the cells.
This is very different from the advertised use case, in a cell-bank even if your sample is not useful, some other sample may be. Plus you don't have to pay unless you eventually use it.
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Originally Posted by amit_arya 2-> if you got a genetic issue then its same genes be it at time of birth or otherwise |
If you read the advertising carefully, almost nowhere do they claim to help your baby - they claim to help the siblings if those are form with genetic issues. For the baby from whom the cells are extracted, the procedure has very little value (read further).
The problem is the samples may not have much value for even siblings - the amount of samples is too small, and alternatives like bone-marrow transplant take care of almost all cases. Plus technology has been advancing very fast in this field for last few years (since Obama came to power - Bush had cut funding for all research and tried to put roadblocks for researchers using outside funding) and recently even skin cells were "fooled"into behaving like stem cells. Chances are within a decade this technology will have next to no utility.
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Originally Posted by amit_arya 3-> The quantity of cells, preservations specially coz in india conditions where electricity issues etc are a lot a big issue
4-> age of 20 - 25 is usually not the age you will require it, mainly at 40+ |
I touched upon these in the above, but the age issue is particularly important - the storage companies do not promise more than 25yrs because frankly it is not known whether the cells will be good after even 20yrs in the freezer.
In the west, it is different - they put the cells in a bank from where anyone else can take the cells as well (and your child can take someone else's cells) - i.e. chances are they will be used before "expiry". This is not the advertised usecase and since neither you can receive someone else's cells nor someone else can receive yours in the Indian context, this is serious.
Quote:
Originally Posted by amit_arya
5-> parents, sibilings usually match. check out the number of stem cells success stories vs bone marrow stuff (source of stem cells from sibling)
6-> in developed countries, if this was too much promissing would have been made mandatory. |
Making it mandatory is possible nly in coutries like China, but in UK unless the parents specifically request not to do it, this is done by default. In US and most of the west it is highly encouraged. However they store it in a bank -read my comments above. In all such cases
the facility is provided free, the user of the cells (not the donor) has to pay at the time of use.
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Originally Posted by amit_arya 7-> reliance some time ago was a public bank (ur cells can be given to others) but gone private now (ur cells only for you) WHY?? coz in public bank the one who needs pay for it but in private one who is preserving pays for it (read demand case) |
This is the other point - in west the demand is coming in countries with govt. run healthcare, almost entirely in the form of a stem cell bank. That is subsidised by the state and so the donor doesn't pay.
In India the donor (i.e. you) end up paying a lot of money for questionable benefits to you, and in fact to anybody else.
Now the
potential benefits are real enough for the state to provide a subsidy, especially because done at a large scale this is not that expensive either.
However to store your own cells without subsidy means the benefits have to be better than "potential" - that is not a settled questions
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Originally Posted by amit_arya 8-> why none of the big corporate dealing in genetics into it. all the companies have tieup with some other foreign company and they are not ready for co-location storing (get the cells, split them into 2 and store some in india and some in US) if required merge the two and give it to us. but the answer is NO even if you are ready to pay 10 times. |
well actually this is neither a good idea nor feasible (legal issues), but more importantly this is off topic.
I think amit is trying to point out here that the sincerity of these companies is questionable, and that I agree to.
They are asking you to pay now, while the cells are good for 20+ years according to them. Now what happens if they go bankrupt in next 5yrs? Are they putting part of your money in bank so the next acquirer can take care of the cells?
Chances of something like a bankruptcy happening to these comapnies are far higher than chances that something bad will happen to your child (though in a large population chances that something will happen to somebody, are fairly high)
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Originally Posted by amit_arya
in short, please pay me the money.. i will act that those precious stuff is stored securely and when you will ask for me (the contract would be over) or i will say sorry the count was low or say the sample gone bad last week and now not usable
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The worst part at the end -
While the chances of the sample being useful to your baby or her siblings in
future are between slim to none, there is a great chance that the baby might be hurt in the
present thanks to the procedure:
To get a reasonably good amount of sample doctors are known to clamp the umbilical cord quickly after the baby is delivered. This cuts the flow of blood (the same one you want to store) and raises the odds of childhood anemia heavily.
There have been studies linking the time (shortness of it) the doctor took to cut the umbilical cord to childhood anemia - effects persists for years after birth.
Several countries are now asking their doctors to wait for a few minutes after birth before cutting the cord, the problem is this also means hardly any storable stem-cell sample remains.
Once again - for countries that bank the samples the above is not a problem, because the usecases are so rare that even if a small percentage of babies yield a good sample, then over a large population a good enough amount of sample may be collected - this is not the scenario for you.
Any good (or at least honest) doctor will tell you that the companies operating in India give the exact opposite of the above advice - cut the cord quickly to get as much sample as possible. I guess that is why Amit_Arya's doctor told him NOT to do it. We must really admire such doctors because there is a cut they get from the money you are paying.
On final note - I came to know about this before becoming a father two years ago. I spent weeks trawling for information, learning new terminology and what not and bothered my relatives (most are doctors) so much some of them stopped taking my calls for some time - ultimately I decided not to do the procedure - not because it was expensive but because I just didn't want to take a chance of extra complications done by a doctor in a hurry to get some stem cells.
I believe I made the right decision.