heel prick? dna on file?

[JanetF]

How do you feel about your baby's dna being owned by the company that does the heel prick test? It's almost always news to people when they find out and I find it shocking that it's not part of the informed consent to the heel prick test along with the information that the disease they're testing for affects approximately 1 in 30, 000 people.
http://www.monash.edu.au/pubs/monash-news/august-2004/dna.html

[poshBecks]

I always wondered about that JanetF!!

So, it is kept on file??

I think GREAT!! Hopefully it will help track down future sickos!!! If you've got nothing to hide, then there's nothing to worry about!! :rolleyes:

[tickle]

I am rather concerned about what they will be using the info for.
I think they said something to me about hereditary diseases or something.
They catch you at the worst time to think about something, when you have a new bub and I never knew about it before they asked when they did it.
I wonder how it can be used?
Would it be kept private to be sold later down the track or would it be accessible to police etc like a criminals is after they have been arrested??
I would really be interested to know all the details??

[poshBecks]

That's a good question Happy Lady....

I don't mind if goes on record for the police, would love to know where else it goes though...

BTW I love your new avator ;) He he he

[Manxie]

Hi Janet

I think its shocking that they dont tell you. Yet another example of consent not really being informed at all, I knew about it but it certainly wasnt anyone at the hospital who told me :mad:

I have nothing to hide but I HATE the fact that my bubs DNA is on record, I value my privacy and dont like the idea of losing control over such a fundamental piece of information.

[JanetF]

I believe you can write to the company and have it destroyed. I find it really scary that so few of us even know about it! Seems a pretty big thing to not consent to properly, yk?

[Tisme]

I was actually informed by the midwives before the test was done on both my children.

The test is to test for common hereditry diseases such as CF and I personally would definately prefer to find out at birth if my child has a disease that may effect them so drastically.

Whilst doing my work expereince (way back when) the Gunthries test was done on ALL children, parents weren't asked to consent ... it was a standard test. When the consent came in was when DNA was made readily storable on data files so that for future reference if your child develops a disease that MAY have been evident at the time of the heel prick they can go back, check and recheck, and add it to FUTURE samples.

Not everything that is done in science today is just for the detriment of the human race. I agree their is alot of wrongful testing out there and mis information, but as a clause in contracts and the such like (and doctors NEEDING to save their arses) if you ask the question they MUST answer.

[WeThree]

my dh would say, yes he knew, and its a bad bad thing....

they should inform woman that this is what will happen, although i dont think alot of us are in a position to make the most informed decisions about these sort of things at the time!

[nemosmum]

Nope I had no idea :confused:

Very scary to think someone out there has my bubs DNA!

JF do you know which company it is? I think I will write to them and demand they destroy it.


Hey who knows there could be half a dozen Orlandos running around somewhere :eek:

[Manxie]

Janet I'd been keen to know who we contact as well.

eleanor-I was happy for the test to be taken, no problem with that at all, what I do have a problem with is them storing DNA. Perhaps I'm just a very suspicious person but to me its sounds like a very convinient way to ensure that they have everyone's DNA on record in the future.

To me its a bit like them giving the Hep B jab at birth- I've been told by several sources that there is no advantage in doing this on Day 0 - it just means that they capture more of the population-ie. those parents who dont turn up for the susequent innoculations. It pees me off that unless you start quizzing they dont tell you this. Sorry side-tracking here.

Re the consent- did people sign written consent or was it just verbal. I dont remember being asked to consent at all, it was just a case of we are taking your baby to do the heel prick test now. I know I could have refused if I wanted to so I suppose the fact I didnt was implied consent.

[tickle]

I think you have to sign. But at the time I was thinking more along the lines of consent to heel prick. My brain was mush (hormonal mess!!), so I don't think it is really a good time to make decisions about anything.
It is funny that they get you to sign forms for the vit k and hep b when you are like 14 weeks preg but they leave this until you are standing there wondering what it is all about and they are about to do it.
Weird. :rolleyes:

[belinda]

i was just going to say that i had to sign a consent form for them to do it and there was all the info in fine print on it and there was a little more i had to read too.... They did mine when they came out to my house and i signed it all there..

[madvoice]

When my daughter Raleigh was born, I was given a consent form for the Heel Prick Test and on the consent form, you were told that unless you wished to have the sample destroyed, the DNA from that test would be kept on file. I saw no problem with it. If you want to get right into things, has anyone thought of what happens to the rest of the blood in the test tube when we give samples for blood tests?

[Tisme]

I guess I'm just not suspicious enough .... I don't have a problem with my kids DNA being filed away .... if it means if my child goes missing and they can id them STRAIGHT away ... or it means that if my child commits a crime later in life that they get caught due to the availablity of their DNA.

Then again I'm an avid believer in the smart card in the police's hands.
How many of you while you were at primary school got fingerprinted by the police for your "passport to safety" or such like schemes?? Have you also asked the police to destroy THAT?

I haven't signed any consent as yet for the vit K or hep shots .... I vaguely remember them at the hospital after the birth. Different obs different practice I guess.

[Manxie]

Hi

Must vary from state to state. I didnt sign a thing for the heel prick or the Vit K, I suppose they'll introduce it once they get sued!!

I do on the ward blood tests and I just chuck out the tube once I've tested it. Not sure what happens when it goes to the lab but I dont imagine they have a sophisticated enough database to store dna at my hospital.

I wonder who has access to the info, are we going to be able to call upon it in the circumstances Eleanor outlined, ie. child goes missing? Be interesting to know

[happyone]

Thanks Janet, I haven't had a child yet and am mortified at the lack of privacy in our society today. I have absolutely nothing to hide but have very strong views on privacy. We have no idea what these companies are doing with this info. They could be selling it to anyone, just as marketing companies do.

I think I might ask for the test to be done later (if I can and when I'm thinking more clearly) or ask for the test to be destroyed. Please think seriously before thinking this or other things like this are no big deal, they are!

Think of the kind of world you want your children to grow up in. The only reason we seem to give up these privacies is when they use FEAR tactics to tell us our child has a rare chance of having a disease or that we need new laws just in case one looney tries to blow us all up. For a free society we are sure quick to give up so many of our rights.

Janet your awesome thanks for all the info. How can we make informed decisions without the actual information.

[belinda]

i didnt think anyone could give a child a needle without consent i even had to sign for the hep b too... i think it is a great idea too as eleanor said if ur child goes missing that have it there and i have nothing to hide... also i think i was finger printed at school at one stage....

[Manxie]

Hi

Belinda-your right they cant give injections without consent, its just there are different ways of obtaining.

The most formal is obtaining written consent which some people seem to have been asked for. This is good as the risks etc are clearly laid out in writing.

The other way is by "implied consent" i.e. by you handing them your baby when they tell you they are going to given them a needle, take blood etc you are providing implied consent. Another example is when a nurse takes your blood pressure, you dont have to give written consent to enable her to do this but by holding out your arm you are giving implied consent. If the nurse just grabbed you this could be deemed to be battery.

:D

[tickle]

If your child goes missing there are samples of their dna all over your house. I guess each to their own but I am definately going to do some more research into this one!! :)

[annsam]

I dont have any issue with it being on file if owned by a govt department or something with controlled policy around it being used for criminal investigations etc.

I do not like it being kept by a private company to use/sell to whomever they wish i.e. insurance companies to determine someones risk of serious illness when taking out an insurance policy.

[WeThree]

Then again I'm an avid believer in the smart card in the police's hands.
How many of you while you were at primary school got fingerprinted by the police for your "passport to safety" or such like schemes?? Have you also asked the police to destroy THAT?



nooooo eleanor say it isnt soo!!!:p ;)
i dont remember being fingerprinted for anything, but i should definetly look into it....
as a sticker dh has says 'paranoia is a total awareness of your environment' hehe:D

[Tisme]

I'm afraid yes ..... LOL

I think I was fingerprinted around 20 odd times most of the time they do detroy the "passport" and its just an awareness thing, but I know the ones that are done at the easter show a couple of years ago were to be used for a safety card ... But I don't really know much detail.

I just don't see what possible use having my children's DNA would be to someone .... whoever wants to have 10 Ciaran's running around sh@@@ing himself is welcome to it!!! LOL

[tickle]

as a sticker dh has says 'paranoia is a total awareness of your environment' hehe:D
Great motto. Have to remember that one, sounds very much like my DH. :rolleyes:

[WeThree]

lol, thought you'd appreciate that one, happy rady :)

[tickle]

Yes makes Happy Rady a happy lady. Hehe. :p
:) :D ;)
Used lots of smilies that time. hehe

[angelraelz]

hiya

well i am new to this forum but i do have some info on this topic.. i am from new zealand and when i was about to have my first son it also came out that it was unsure what they were using the heel prick blood for after they did the test. It was told that they would go on file in this big storage building to be used for what ever govermnet or police would like to use it for.

It was also said that the blood from your childrens heel tests are actucally yours after they have done the test and should be distoryed. No one had a right to keep them at all on file as when u have your baby you were told that it was only for the test and would be distroyed. but they werent doing that..

So when i had both of my sons heel prick tests done i wrote on the form that when the tests were completed that i would like it back.. I also wrote a formal letter asking for the return, this is what my midwife also suggested. And it worked.. i have both my sons heels tests. It took a little while but i got them back.

I think we have a right as parents to ask for it back when they are finished with it. I am in melbourne now and planning to have another baby soon as i can get pregnant and i will be doing the same as i did in new zealand to request them back, i hope they do send it back to me

angel

[JellyBean06]

They did this for me 25 years ago and my blood (although useless) is still on file. Mine is only useless because they used to put the blood onto paper - not anymore! You have the right to refuse it. They will keep your babies DNA on file forever and in recent times, SA and WA Hospitals were busted retesting DNA from babies for criminal cases!

So, I will get the tests done but via Clinpath, Gribbles or IMVS where the blood is tested like everything else - you're a number, it's screened and then disposed of. They don't need to keep it and the excuse of restesting is bollocks because the diseases they test for are either there or not.

[JellyBean06]

For all those not aware the test is called a Guthrie Test and your test will be on file at whichever hospital you were born in. Be aware that although it is your blood and DNA and you have the right to access your files you DO NOT have the right to take and keep the file as they are covered under the same laws as your medical files that you have with your doctor - looky but no touch.

Of course this may change and some pending court cases in some states may change this. Also, if your hospital closed, it may have been moved to a central hospital or storage facility ie QVH, Adelaide Children's etc are now all under the WCH, North Adelaide.

The tests do date back more than 50 years, although, after speaking with the technician who looks after the files at the Modbury Hospital in SA, really any tests on the old paper cards are now no more than discoloured browny red dots with no viable DNA. Mine was done in 1980 - I dont think the plastic containers came in until the 1990's (I could be wrong). So while it may mean nothing for us parents, certainly having your child's DNA profile floating around is of some concern if not in the present climate then what they could be doing in 10 - 20 years.

[Tisme]

Both my children's Guthrie test was done with blood on card .... so I guess it is not so terrible that this issue is not of a REAL concern to me.

[Shazbutt]

Yep, same here, so i'm glad i don't have to worry about it either....

I thought they were all done on card? But then again i come from a country town and maybe thats what they do?

[reAllytee]

My bubs test was done using paper also & it was a major hospital in Sydney. I too was also asked permission & was given all the details as to what it would be used for & in fact i believe still have it with bubs blue book or at least with other paperwork we kept. I also dont have a problem with it being kept on file but thats me im not paranoid about things being used as a big conspiracy im sure there are other things they can use. Especially as they can retrieve a can of drink or cigarette butt to use for dna these days so i doubt all of you go around carrying your garbage to dispose of yourself to avoid this being done :rolleyes:
Sorry im not meaning to sound terrible & i apologise if you take offence to what ive said i guess if your not being given details about the test or having bubs tested without giving your permission then you do have a right to be angry and/or upset as i would be so maybe then you do have to talk to someone about this.