Heel Prick Cards and National Priorities

I guess I had been vaguely aware of the controversy about the retention of “heel prick cards”, the cards containing the blood samples of over 1.5m irish born babies, from the heel prick blood test used on newborns.  This test is used to diagnose a variety of diseases, genetic and otherwise. Its been proven to be a valuable tool and is absolutely standard. The cards on which the blood samples are stored have up to now been retained, indefinitely. This is it seems about to change

In a nutshell the Data Protection Commissioner, working of course within his powers and quite properly as the law stands, has said that as these are personal data they must not be retained without permission of the person. The minister for health, a medical doctor we should recall, has agreed that these must be destroyed after 11 years retention.

I have to say this causes me great disquiet. First, this represents a unique national resource, containing a databank of the genetic code of the population. The research potential of this is literally incalculable. At a time when irish genetic scientists are forging ahead (in shrinking resources) on unravelling genetic deseases that are overly prevalent in the irish population (coeliac, SADS, and CF being amongst them) it makes no sense to discard such a resource.  In fact, it is a blunder of the first water.

Second, we have an opportunity here to engage in cold case analysis for unsolved crimes. As forensic science advances genetic material is more readily extractable from old evidence.  Running this against this national database can only assist the police in closing open unsolved cases. I am aware of the civil liberties arguments on genetic databases, but these tend in my view to be outweighed by the possibility of catching rapist, murderers and other criminals, no matter how much they think they have got away with it.

Yes, there is a legal barrier to this at present. But our governments over the years have shown themselves well able to act swiftly (if not always wisel) to put in place emergency legislation to protect financial interests. Lets amend the data protection laws, to give people a fortnight to ask for their samples to be destroyed, and then move on. This is a precious national resource and must be retained. The state in its foundation suffered a catastrophic loss of records with the philistines who colluded in the destruction of the records in the Four Courts. Lets not have further generations look back on this with a similar sense of “what were they thinking” . In a week when the government still have not cleared the use of personal data with the Data Protection Commission in order to chase households for the household charge they can ill afford to lurk behind Billy Hawkes in this regard. Lets see some leadership, some imaginative thinking from the Irish body politic…you in the back, stop sniggering….

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5 thoughts on “Heel Prick Cards and National Priorities

  1. David Traynor

    I absolutely agree with you on both counts.

    Our gene pool is too restrictive resulting in conditions such as cystic fibrosis thus when researchers in this area should find this database an invaluable resource.

    In terms of criminality I’m sure the law abiding citizens would have no issue with its use by forensic science in solving cases.

    Reply
  2. sf ca writer

    @ Brian
    Would it change your mind to know, for certain, that from time to time blood samples, not pin pricks but actual samples have (and presumably could continue) to find their way out the back door of Irish hospitals into Pharma R&D hands. I have seen them myself even with patients names still on the sample vials, and not one single chain of custody document. Shocking, immoral, truly banana republic stuff, related to lack of accountability. I have only seen it in Ireland, and only in the late 90’s, but the number of people with rights and privacy violated over those years…who knows.

    Reply
  3. FERGUS O'ROURKE

    You say:

    “I am aware of the civil liberties arguments on genetic databases, but these tend in my view to be outweighed by the possibility of catching rapist, murderers and other criminals, no matter how much they think they have got away with it.”

    Since, however, you do not explain your view dismissing the “civil liberties arguments”, your readers cannot assess the justification for so dismissing them, and from that point of view, your post is bald assertion.

    For my part, I am aware of the arguments that it would be useful in all sorts of ways for State agents to know everything about everyone, but they are comfortably outweighed by the fact that such arguments are transparently totalitarian in nature, and anytime a point like that of David Traynor, i.e the innocent have nothing to fear, is made, a chill runs down my spine. The point made by sf ca writer above only scratches – or perhaps “pricks” is a more appropriate word here – the surface.

    Reply
  4. sf ca writer

    I think samples like these become less valuable as technologies like RNA expression arrays become a reality. Does Roche trying to buy Ilumina for example, indicate that individualized medicine is on the horizon?
    Soon the only way to participate in modern medicine will be to revoke all your genetic privacy, Individualized medicine is the holy grail, but how else could it work ?
    The next generation will see it that way, just like they expect to be on camera if they go out in public, which usually they are.

    Reply

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