Newborn screening (Heel prick test) cards to be destroyed

Lady Chatterton

I was just listening to an item on radio about Newborn Screening Cards.

All babies born in Ireland are screened for 6 rare conditions soon after birth, so that babies with rare conditions can be given early and appropriate care. This is known as the Heel Prick Test. It involves taking a few drops of blood from the baby's heel onto a screening card for testing. The screening programme was updated in June 2011 and screening cards are now stored with parental consent for 10 years after the test is completed.

Basically, the Data Protection Commissioner has asked the HSE to destroy all cards over ten years old as retaining the information longer than that would fail to comply with EU Data Protection Legislation.

This means that screening cards from babies born between 1984 and 2002 will have to be destroyed this year. In the future cards will be automatically destroyed when they reach ten years old. You can request to have your card or your child's card retained but you have to inform the HSE. There is a form on the HSE website for this purpose but I'm not sure that many people are aware of it.

This isn't something that affects me personally as I was born before 1984 and my own child was born after 2002 (it will be a while yet before her card comes comes up for destruction).

However, I wanted to start this thread so other parents would be aware that they could ask for their/or their children's cards to be retained. One contributor to today's radio programme claimed that these cards hold very valuable information, she had lost a son and another family member to Sudden Adult Syndrome and she claimed that having the newborn screening card made it possible to make more investigations - genetic screening etc.

pwurple

I didn't hear the radio program, but was the woman saying that the drop of blood soaked into cardboard from 10+ years previously would be useful for genetic screening?

This seems a little far fetched.

Lady Chatterton

pwurple wrote: »

I didn't hear the radio program, but was the woman saying that the drop of blood soaked into cardboard from 10+ years previously would be useful for genetic screening?

This seems a little far fetched.

I'm not a medical person at all, so I've no idea if there is any merit in her argument. I was just relieved that nothing showed up on my daughter's test when she was born and I put the test to the back of my mind after that.

Having said that, when the time comes in a few years, I'll definitely be asking the hospital to retain my daughter's card or for them to send it to me. I'd prefer for it not to be destroyed on the off chance (no matter how slim) that it might be useful at some point.

Orion

I can't see how it would be useful and the skeptic in me would want it destroyed immediately after the screening tests are completed - why would the hospital need to keep them at all once they have the results?

[edit]And that can be done - printing the form now to have the cards for my daughters returned to me - I'll keep them or destroy them at my discretion.

MrCreosote

pwurple wrote: »

I didn't hear the radio program, but was the woman saying that the drop of blood soaked into cardboard from 10+ years previously would be useful for genetic screening?

This seems a little far fetched.

There's no major problems technically with doing these kind of tests. It's been possible for over 20 years now.

It can be used for two things mainly- family screening for example of people have died some years ago, and (anonymous) population studies

Morag

http://newbornscreening.ie/

Information on Stored Newborn Screening Cards

All babies born in Ireland are screened for 6 rare conditions soon after birth, so that babies with rare conditions can be given early and appropriate care. This is known as the Heel Prick Test. It involves taking a few drops of blood from the baby's heel onto a screening card for testing. The screening programme was updated in June 2011 and screening cards are now stored with parental consent for 10 years after the test is completed.

The National Newborn Bloodspot Screening Programme has older screening cards from all heel prick tests carried out since 1984 in storage. To comply with national and EU Data Protection law, these screening cards from babies born between 1984 and 2002 will be disposed of during 2013. From 2013, this will be done every year for cards over 10 years old.
Options for Screening Cards

Below are the options available to parents or card owners, and you can read a more detailed question and answer sheet here.

For Babies born from 1984 - 2002: If you are happy for your or your child's screening card to be safely disposed of in 2013, take no further action.

For Babies born from 1984 - 2002: If you prefer that the screening card is returned to you and not disposed of in 2013, you can request the card to be returned. The request must come from the parent or guardian of the baby who was screened, or from the person screened if they are now aged over 18 years, or by their next-of-kin if they are deceased. Download a form to request return of a screening card here.

For Babies born from 2002 to July 2011: You may prefer that your child's screening card is not stored for 10 years and can request that the screening card is disposed of at any time. Download a form to request disposal of a screening card here.

You can also request your child's card to be returned to you, even though it is not due for disposal in 2013 - use the form to request return of a screening card here.

To request a card return, or a card disposal:

Download one of the forms on on this page or call 1850 24 1850 to request a form to be posted to you
Complete and return the signed form and copy of identification documents mentioned in the form.
Requests must be received on or before March 31st 2013.

So they weren't meant to hold on to the cards, and now they are destroying them as they have been told it's best practice but you can request them.

Orion

Morag's thread merged with existing one

Morag

thanks didn't see the other one and the deadline for requesting them is coming up.

Orion

No bother - it's as well to bump it anyway as a reminder (for me - I got the form and haven't sent it in yet - mine are due to be destroyed next year so I want them now.)

Orion

IHF calling for people to claim their cards:

http://www.thejournal.ie/hse-newborn-blood-samples-destroy-828836-Mar2013/

b318isp

I don't understand this at all. The IHF CEO has stated:

"This extraordinary inaction in the face of what is potentially a life or death issue for thousands of people countrywide has to be challenged. Destruction of the cards presents a very real danger to a large group of people.
"The HSE must meet its duty of care to do what it can to protect them."

Source

Is this a gross exaggeration or is it a real issue? Does it mainly apply to those where there is a family history of SAD, or does it apply to whole population?

Orion

I think it's complete hyperbole myself. tbh I was shocked that they kept them in the first place - my issue is with retention without my permission. That's why I'm getting mine back from them.

lonestargirl

b318isp wrote: »

I don't understand this at all. The IHF CEO has stated:

"This extraordinary inaction in the face of what is potentially a life or death issue for thousands of people countrywide has to be challenged. Destruction of the cards presents a very real danger to a large group of people.
"The HSE must meet its duty of care to do what it can to protect them."

Source

Is this a gross exaggeration or is it a real issue? Does it mainly apply to those where there is a family history of SAD, or does it apply to whole population?

I do find that a bit over the top too. What I also find odd about the form is that the option is not given to consent for the card to be held and used for medical research, it either gets returned to you or destroyed.

Orion

Kathleen Lynch has indicated that this may be stopped. Love this line though: "However, she warned that dealing with the matter retrospectively would be difficult." - no $hit sherlock.

The Health Committee will discuss it on March 28th.

http://www.rte.ie/news/2013/0313/376533-efforts-under-way-to-save-heel-prick-tests-lynch/

Conor Bourke

Hi all,

Not sure if this has been discussed already but I just thought I'd pop this in here. Mods, if this is the wrong forum, please feel free to lock/move. I'm also going to cross-post in Biology and AH.

Due to data protection concerns, the HSE is obliged to destroy all of the cards containing the "Heel-Prick" blood samples taken from newborn babies between 1984 and 2002. The blood on these cards was initially used to screen for hereditary metabolic disorders which would not be otherwise obvious in a newborn child. In recent years, in other countries, the DNA on these cards has been successfully used to help identify and screen for the gene responsible for cardiac conditions which can cause Sudden Adult Death Syndrome. I think it would be worthwhile to apply for my card, and my siblings for theirs because who knows what other conditions may be identified through genetics in years to come. My mother has MS which is essentially a "new" disease so relatively little is known about it. My brother died from Sudden Death in Epilepsy and nobody could tell us how/why he spontaneously developed it. It might be a complete shot in the dark but I think that it's worth getting a hold of my card for the sake of future generations. Parents of children born during this period can apply for their child's card(s) or if the child themselves is over 18 they can apply themselves.

You can download an application form to get your card here. Closing date for these applications is March 31st 2013. Just putting the word out in case anyone is interested.

Orion

another thread merge/bumpage

Das Kitty

Applied to have my son's returned to me even though it was only 3 years ago.

I actually don't trust the HSE to store or destroy them correctly and would rather have it myself.

Solair

I suppose the issue is that they could form the basis of some kind of national DNA database.

While that could be useful for certain things, there are also huge ethical issues raised by keeping data that is *that* intimately personal on file for no explicit reason.

I'd also question the value of the information contained on the cards, as it's just dried blood on a card. Once it's more than a few days old it's going to start to disintegrate and be attacked by bacteria.

I would doubt there would be very much useful information on a 10 year old card. You'd have to store the blood in a much more scientific way than just dabbing it on a card.

I mean, it might be of some use, but it's hardly an ideal way of storing genetic information.

RubyXI

Will a photocopy of birth cert do?

Das Kitty

phi3 wrote: »

Will a photocopy of birth cert do?

Yep.

pwurple

Solair wrote: »

I'd also question the value of the information contained on the cards, as it's just dried blood on a card. Once it's more than a few days old it's going to start to disintegrate and be attacked by bacteria.

I would doubt there would be very much useful information on a 10 year old card. You'd have to store the blood in a much more scientific way than just dabbing it on a card.

I mean, it might be of some use, but it's hardly an ideal way of storing genetic information.

You'd be surprised. Drying is a pretty good way of preserving organic matter. Think of parma ham, and other dried meats. Bacteria prefer a bit of moisture, so drying protects it from that, and blood can be reconstituted fairly well from a small spot with the right solvents.

It's not ideal, you're right, and I don't think we need ours as we have cord blood banked (probably a gimmick, but it came free with the medical trial we were participating in at the time). I would be interested in reading the card maybe. Seeing with my own eyes that the tests were passed.

dahamsta

Just a note since people seem to be missing the point: Yes, it was wrong of the HSE to retain these without permission and yes, the data in its current format is dangerous, but if the data were _anonymised_ now it would become an incredibly valuable resource for medical research -- backreferencing heart disease or cancer genetically decades down the line, for example. The response was ill-thought out, and kneejerk; typically Oirish.

Das Kitty

dahamsta wrote: »

Just a note since people seem to be missing the point: Yes, it was wrong of the HSE to retain these without permission and yes, the data in its current format is dangerous, but if the data were _anonymised_ now it would become an incredibly valuable resource for medical research -- backreferencing heart disease or cancer genetically decades down the line, for example. The response was ill-thought out, and kneejerk; typically Oirish.

How can you anonymise DNA?

The response is not kneejerk; it's in compliance with Irish and EU law.

Solair

Das Kitty wrote: »

How can you anonymise DNA?

The response is not kneejerk; it's in compliance with Irish and EU law.

Take the names off the cards and jumble them up so that all that you had was the year of birth.
That way you could use them for population-based research rather than individual research.

The issue is more that the samples were stored without informed consent and they are personal data i.e. your genetic material.

You can't really gather that kind of information and then use it for a purpose other than what it was originally intended i.e. post-natal disease screening.

There are also quite valid concerns that it would be moving into a "Big Brother" type scenario too.

Das Kitty

Solair wrote: »

Take the names off the cards and jumble them up so that all that you had was the year of birth.

And the person's DNA...

By its nature, every individual is identifiable from their DNA.

Solair

Das Kitty wrote: »

And the person's DNA...

By its nature, every individual is identifiable from their DNA.

Well, they're identifiable but only if there's some kind of database connecting their actual identity with their DNA sample somewhere else. Otherwise, it's just random human DNA until someone puts the person together with the DNA match.

However, I don't agree with storing it without proper consent. You should have to opt-in to any kind of research like this.

The card should never have been stored in the first place without consent. It's as bad as storing blood samples or any other tissue sample on file indefinitely without telling people and asking their permission.

The problem is that while it may be well intentioned, there could be all sorts of potential issues and concerns.

E.g. what if, let's say, an insurance company were to get access to the data from DNA and start loading policies based on it?

It's a legal and ethical quagmire to put it mildly.

LegacyUser

just to let you all know you neither need a 'form' nor is there a legal 'deadline' for getting your or your child's card back. i just sent them a strongly worded letter demanding mine back and got it no problem. no form needed. it is your property and they cannot keep it under any circumstances, certainly not for missing some pie in the sky 'deadline'.

Morag

Looks like it's being delayed

http://www.irishtimes.com/news/health/reilly-does-u-turn-ordering-hse-not-to-destroy-newborn-blood-samples-1.1338666

Maybe_Memories

I'm currently missing by birth cert. Any way of applying?

Das Kitty

You'll need to go to the Births Death & Marriages office. Probably in the hospital you were born. It costs a few quid. 15 when I got mine 5 years ago.

January

Das Kitty wrote: »

You'll need to go to the Births Death & Marriages office. Probably in the hospital you were born. It costs a few quid. 15 when I got mine 5 years ago.

€20 now.