Importance of newborn heel pr*ck test and is it ever refused?

[OceanPrincess]

I found out about this test in my first antenatal class on Thursday. I agree that it is important for screening and have no problem with that.

Also I agree with Kate's comments about CF screening - I was tested before DH and I began TTC.

The thing that concerns me about the heel pr*ck test is that they retain the blood sample. The midwife didn't know for how long, but she thinks indefinitely.

Does this concern anyone else? That somewhere, out there, there is a big database that contains our DNA and personal information?

Have I been watching too much CSI? It all sounds a bit too much "big brother is watching" for my liking...

[Kailani]

OceanPrincess, that was one of my questions in my original post - a government conspiricy of some kind perhaps? It doesn't really "concern" me, I'm just curious to know why they keep everybody's DNA on file even after recording the results...

[Rouge]

It was certainly traumatic for Seth, Paris I wasn't there for but Marc was.

Something to keep in mind, some states also use it as a way to store DNA (unathorised too I might add) so if you want your child's DNA destroyed you have to specifically ask for it to be done. Just a bit of FYI.

[HotI]

Something to keep in mind, some states also use it as a way to store DNA (unathorised too I might add) so if you want your child's DNA destroyed you have to specifically ask for it to be done. Just a bit of FYI.

Parents are supposed to be given info before the birth (in Victoria it is a brochure) and given opportunity to discuss it. This brochure also details the fact that the card will be stored. Parents have the right to refuse the test and verbal consent is supposed to be attained before the heel pr!ck is taken. In practise, i don't think this always happens but if procedures are followed correctly, the parents are authorising the taking of the sample , the testing of the blood and the storage of the card.

What do you mean by storing DNA?

Each State retains the card containing the blood spots for a certain period of time. Victoria is indefinately (i am pretty sure) but some of the other States have a time limit.

Following testing, the cards with the blood are stored in a long term facility. Yes, the blood on the card contains DNA. Yes, the cards are stored.

But, it's not like the DNA has been sequenced and is in a databank where anyone can tell anything about it or access it willy nilly.

Blood on a card still has to have things done to it to obtain the DNA, and then test it for whichever gene or marker you are looking at.

Limited access to the cards is available for research, where the researchers have to fill out big ethics applications and it has to go to a human research ethics committee to allow access to the cards.

As part of some research that i did, we accessed blood cards from consecutive newborn samples from 10 years earlier. The researchers do not get any identifying info from the cards. A punch hole from each card was placed in a tube (by the people in charge of the cards) and the researchers were given the bag of tubes with the card circles in them. I was not apart of the ethics submission, but i heard that it was intensive. Researchers never get identifying info, and any results from the research can not be traced back to any one person.

I would not want some to check the breast cancer genes or alzheimer genes from my card and tell me I was at increased risk (without me seeking the info for myself), but i am quite comfortable with the idea of my anonymous card being used to further medical research that might help others in the future.

What is it about having your (or your child's) DNA stored that concerns you (if it does)?

[Visitor8]

wow Kate! I haven't ever been bothered with it but that i's so interesting

[OceanPrincess]

Kate, thanks so much for all that info. Has helped put my mind at ease somewhat!

I didn't like the idea that it is a potential to become like something out of the movie Gattaca (sp?) - where everyone's DNA is stored and you can access it willy nilly.

I know right now, in 2009, this is not going to happen - but who knows about the future?