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Heel Prick Test

  • 19-03-2013 12:16pm
    #1
    Conor Bourke
    Hosted Moderators Posts: 17,425 ✭✭✭✭


    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 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.

    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.
    __________________


Comments

  • #2
    Dingle_berry
    Registered Users, Registered Users 2 Posts: 885 ✭✭✭Dingle_berry


    Fair enough if you want your card back, you're entitled to it. But for genetic screening - it's not like your genome has changed since! You would probably be better off submitting a fresh blood sample or buccal swab to screen for genetic disease.
    I believe the lab was the subject of a complaint or was advised that it could be. Also the storage of these cards will eventually become costly in terms of space and money. Histology labs don't keep their samples indefinitely. Blood science labs don't keep samples beyond a week.

    It would be nice if the cards were anonymised (but maybe with family links maintained) and used for research into the genetics of Irish people. But I can imagine the calls to Joe Duffy and tabloid stink if that were seriously considered. Plus if labs cant get staff to cover maternity or sick leave how would they get staff to anonymise all the cards?!


  • #3
    Tree
    Moderators, Science, Health & Environment Moderators Posts: 4,757 Mod ✭✭✭✭Tree


    For deceased individuals, the cards would still have value to the family. So retention of the unanonymised cards could still be useful in investigating unexpected deaths.

    For live individuals, you can take as much DNA as you want from a fresh sample. So getting your own card back might not be so useful.

    They would be a great research tool for identifying common mutations in the irish population, but if you got fresh samples with full consent you could have a much more useful set of information that also included some medical histories and lifestyle data.


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