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Government Plans to get Rid of Potentially 'Priceless Resource' on a Whim.


Should the Irish government make an exception to data protection acts and retain Guthrie cards?

  • Yes

    Votes: 64 66.7%
  • No

    Votes: 32 33.3%

  • Total voters
    96
  • Poll closed .

ruserious

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Jan 3, 2011
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Since 1966 every child born in the State has been subject to a heel príck which is taken shortly after birth. Only records taken after 1984 exist after water contamination on the records from 1966-1983.

Now, the government plans on getting rid of this vital information.

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.
newbornscreening.ie


But as professor of genetics at Trinity College Dublin, David McConnell said it would be:
modern equivalent of burning the Customs House, or destroying the birth certificates of all born in Ireland
This is the crux of the issue:
It would also allow the health authorities to obtain a more accurate picture of the health risks of the Irish people as a whole, and this would allow us to introduce more valuable and effective health services
This information can provide us with an excellent snapshot of Irish health and is a disgrace they are being dumped.
Clearly storage isn't the issue at hand when one looks to the e-voting machines so it boils down to data protection.

I certainly believe the benefits outweigh any negatives associated with privacy if these records were kept.

Calls for 'priceless resource' of heel ****************************** test results to be saved - The Irish Times - Tue, Feb 05, 2013

What y'all think?

<Mod> This thread has been merged with "Heel Pr1ck cards, only two weeks to get them back." </Mod>
 
Last edited by a moderator:

ShoutingIsLeadership

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Jan 17, 2011
Messages
50,459
Important link within your link, ru.

There is an opportunity for some parents to 'save' their children's data.

newbornscreening.ie

Edit: The link doesn't link properly.
 

Dame_Enda

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The EU meddling in our affairs yet again for no good reason. We should use the database to create a national DNA database for tracking down criminals.
 

ruserious

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I think the common good would be served by keeping these records which justifies a breech of data protection in this instance.
 

Radix

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I think the common good would be served by keeping these records which justifies a breech of data protection in this instance.

What about the unwanted babies?

Will Enda be prícking their heels as well?
 

Clanrickard

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Apr 25, 2008
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More evidence of the absurd legaleses this country engages in as NGOs and QUANGOS compete with each other to be outraged and engage in turf wars. These records should be kept.
 

bob3367

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Jan 11, 2007
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8,083
We really need to stop this and quick.

Most new medicines are now been developed on the genome level, it is envisaged that in the not to distant future there will be the situation whereby medicines will be made especially for you, I think its called PPE.
Most diseases are now known to be the result of genetic mutation, no matter how small this mutation is, diseases like Cancer, CF, Diabetes, MS, etc are now generally accepted to be caused by genenic mutations.

I plead with people to ensure that you either get your own, or at the very least get your childrens if like me mine was destroyed.

On an aside this information should be kept in a central database, where medical research can use the data, it could give rise for a wonderdrug to be developed by an Irish Scientist, that could generate billions and provide the country with employment and prestige.

I often wonder why are so against medical R&D in this country.
 

bob3367

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Surely it would satisfy the legal requirements simply to anonymize the data. Facebook is allowed to sell all kinds of personal details to advertisers if they anonymize it.
Apparently it would be of little value to the geneticists, Deridre Madden, Dr of law in the area of genetics was asked to look into this from a scientific and moral stance, I havent heard anything about it since sometime last year.

Really there should be poll put up here to see what people think, it wouldnt be definative but it might give an idea of who people view this.

The importance of this is not easily explained.
 

Skyrocket

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bob3367

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I agree that they should be kept. The Government should follow Professor John Crowe's advice:



Here's what the card looks like: http://www.hse.ie/eng/services/healthpromotion/newbornscreening/newbornbloodspotscreening/Publications/samplecard.pdf
You mean take the advice of one of leading oncologists, com'n Skyrocket this is Ireland.

Actually I am a little surprised at the silence of our medical profession, you have plenty of coverage regarding pay and conditions and fck all comment of this issue.
 

cabledude

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Jan 23, 2011
Messages
6,362
Whats the logic behind destroying cards after 10 years? What possible harm is it to keep records. Data protection laws - being used to destroy records. Oxymoron anyone?
 

ShoutingIsLeadership

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Whats the logic behind destroying cards after 10 years? What possible harm is it to keep records. Data protection laws - being used to destroy records. Oxymoron anyone?
As I understand it, the continued retention of the data was in breach of data protection laws (Rules 1 and 2, specifically).

i.e. that the data was 1) not being processed fairly as it was being stored for unspecified future use, and 2) as it had been acquired for a specific purpose - the testing for certain illnesses - that purpose had long since passed, and there was no justification for keeping the data.
 

Samell

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Why are these records held by the government? surely they are part of the patients medical history and should be held by their GP.
 

bob3367

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As I understand it, the continued retention of the data was in breach of data protection laws (Rules 1 and 2, specifically).

i.e. that the data was 1) not being processed fairly as it was being stored for unspecified future use, and 2) as it had been acquired for a specific purpose - the testing for certain illnesses - that purpose had long since passed, and there was no justification for keeping the data.
Its incredibile to think also that Ireland was at the forefront of introducing this in 1966, yes the legisaltion for it was written in the 1960's and yes it had one purpose.
But this is 2013 science has moved on, we have the data, surely common sense should tell us that this data is of national importance.

On the other thread, regarding the Mother of two trying to protect her children by getting DNA information from her birth mother could be facilitated by this database.

I dont want to sound crass here, but also couples wishing to start a family could have this data analysed before getting pregnant, to understand any risks that might be present for mother and baby.
 

bob3367

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Why are these records held by the government? surely they are part of the patients medical history and should be held by their GP.
Thats an excellent point actually, and thats where I think a campaign should begin, why not tell the people that if they go to their GP and inform them that they want the records retained, let them do it.

But I still reckon a central data base should be kept for medical research.
 
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