Heel-Prick Test Card Destruction

Conor Bourke

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 very "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.

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.

Gatling

Aren't the HSE working on trying to save the cards

Conor Bourke

I'm not sure if they are or not to be honest. As far as I'm aware there would have to be an amendment to the current data protection legislation to save the cards and I'm not sure if there's enough time to do that. In any case, I'll apply for mine to be on the safe side.

im invisible

Born before 1984,
feels old

Gatling

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

sbsquarepants

It's not as if the cards contain the last speck of dna in your body - if they're destroyed so what, you could always spare another drop of blood should you want it tested for something or other!

Czarcasm

im invisible wrote: »

Born before 1984,
feels old

They're updating the tests all the time though, in 2011 they added testing for Cystic Fibrosis which is a very common genetic illness in Ireland.

I understand they're destroying the cards to comply with Data Protection legislation but they should've implemented better procedures to anonymise patient records before now so they could keep the data for research purposes but patient records would remain confidential.

Terry1985

Alaskimo-cake wrote: »

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.

if it's just a blood test surely a fresh blood test on an adult would be more effective?
The privacy concern is that the government has potentially has access to the dna
of everyone in the country.
what if they gave you a lower state pension because you're genetically likely to live longer,
or share the data with health insurers?

seven_eleven

The fact that you have to travel all to Dublin and request it puts me off it completely. I think you might even have to travel to Dublin more than once?

Conor Bourke

Gatling wrote: »

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

Minister Reilly is "looking into it".

Doesn't exactly inspire confidence to be honest...

Dravokivich

Terry1985 wrote: »

if it's just a blood test surely a fresh blood test on an adult would be more effective?
The privacy concern is that the government has potentially has access to the dna
of everyone in the country.
what if they gave you a lower state pension because you're genetically likely to live longer,
or share the data with health insurers?

CT Forum ->


To be honest, I think the whole "Data Protection" issue is blown widely over the top. No one is going to steal my credit card info, or sell me a lower rate electricity supply based on my DNA. The purpose of it appears to be in identifying what health resources are required for the population along with trends in genetic problems. I don't see why that's such an issue.

Conor Bourke

Terry1985 wrote: »

if it's just a blood test surely a fresh blood test on an adult would be more effective?

True enough. I'm applying for my late brother's card anyway, just in case.

seven_eleven wrote: »

The fact that you have to travel all to Dublin and request it puts me off it completely. I think you might even have to travel to Dublin more than once?

No you don't, you just send off a form

Gatling

Can't stand when people use paronoia in every discussion when it comes to DNA ,what if your fitted up by the garda ,oh there cloning me without permission ,oh social welfare pensions, tax and so on and so on

IM0

Dravokivich wrote: »

CT Forum ->


To be honest, I think the whole "Data Protection" issue is blown widely over the top. No one is going to steal my credit card info, or sell me a lower rate electricity supply based on my DNA. The purpose of it appears to be in identifying what health resources are required for the population along with trends in genetic problems. I don't see why that's such an issue.

<- gulability naive forum






touche!

Czarcasm

Terry1985 wrote: »

if it's just a blood test surely a fresh blood test on an adult would be more effective?
The privacy concern is that the government has potentially has access to the dna
of everyone in the country.
what if they gave you a lower state pension because you're genetically likely to live longer,
or share the data with health insurers?

It's much less of a privacy concern than an actual issue of consent. From the RTE linked article-

The impending destruction of the Guthrie cards follows a decision by the Data Protection Commissioner who determined that the holding of the information on the cards was unlawful because consent had not been obtained from parents, or guardians.

The tests are done on babies as standard to detect and study genetic conditions such as Cystic Fibrosis and SDS, and the earlier these conditions can be detected, the sooner treatment begins. It simply wouldn't be reasonable to expect all parents or guardians to be fully versed on each and every one of these conditions to enable them to give informed consent, therefore some tests should be carried out as standard and procedures put in place to anonymise personally identifiable data so it can be used for research purposes.

Ihatecuddles-old

I was born in '91, don't think I'll apply.

Dravokivich

IM0 wrote: »

<- gulability naive forum






touche!

N'ah, that's this direction -><-

Mr Simpson

Gatling wrote: »

Aren't the HSE working on trying to save the cards

Nope, the Irish Heart Foundation are

seven_eleven

Alaskimo-cake wrote: »

No you don't, you just send off a form

Nope, you have to go to Dublin and present yourself at (matter?) hospital, or some health place anyway. And show Identification that it is actually you applying for it.

Says some senior doctor lad on the radio last week.

Terry1985

Alaskimo-cake wrote: »

True enough. I'm applying for my late brother's card anyway, just in case.

the whole thread is about data protection and you're going to apply for someone
elses Medical records ?

Conor Bourke

seven_eleven wrote: »

Nope, you have to go to Dublin and present yourself at (matter?) hospital, or some health place anyway. And show Identification that it is actually you applying for it.

Says some senior doctor lad on the radio last week.

No, you don't. If you care to check the link I posted in the OP you can see that all you need to do is complete a form.

Conor Bourke

Terry1985 wrote: »

the whole thread is about data protection and you're going to apply for someone
elses Medical records ?

I didn't start this thread to discuss the topic of data protection, I was merely letting people know that if they wished to save their cards they could do so before it's too late.

It's not like my brother is going to resurrect and apply for his own records :rolleyes: There are clear guidelines on the application form to deal with the scenario of applying for the records of a deceased person.

Vojera

So, what happens if you send off the form? Do they keep those cards with our consent or do they send the card out to you?

And then what happens? If you get the card, what are you meant to do with it? If they keep the card, will it actually be useful or is it just taking up space?

Gatling

Actually does anybody know if the cards are kept under controlled conditions ,ie not in card board boxes

Capt'n Midnight

Gatling wrote: »

Actually does anybody know if the cards are kept under controlled conditions ,ie not in card board boxes

they had cards from 1966 until they lost them due to flood damage in 1984


is there any way they could annonomise the cards remove all the identification such that you could still do disease research without identifying anyone ?

seven_eleven

Alaskimo-cake wrote: »

No, you don't. If you care to check the link I posted in the OP you can see that all you need to do is complete a form.

I did check the link. I'm only telling you what the doctor on RTE radio stated last week. She was speaking on behalf of the Irish Heart Foundation iirc.