IGOpeople

I think you are over reacting to this article - blood samples are kept only to help kids . I dont know what age your children are but these samples may often be the only chance to help diagnose any problem that could occur with your kids health in the future. Samples may only be used with parental consent in this instance and at the request of your doctor. I dont think keeping the samples permanently is necessary but for about 5 -10 yrs could be of benefit to children's health

Genny,

I think that you got some of the information wrong; These samples were not kept with the parents consent or knowledge, they were not kept to diagnose possible future health problems and there was no plan to only use them with the parents consent or at the request of a doctor. These samples were kept without notifying the parents or children in question, without public knowledge and without disclosure, period.

As said before I have no issues if these samples were kept in order to develop a screening program or genetic research or something similar. However it should have done with the parents permission and with full disclosure. it would also no require that the names & adresses of the children would be kept on record. It is wrong and needs to be corrected ASAP.

As I said I am afraid you are quite wrong about all of the above - there is no secret conspiracy theory among hospital scientists - it is national policy that residual samples may be used for Quality Assurance and  method development as long as they are used anonomously ie  not linked to patient data. If a sample is to be used for any test for which it was not collected and linked to patient details ie further testing to aid in diagnosis  or treatment then consent must be received from patient or parent/guardian via the doctor concerned. This can in some cases be of great value for a childs/family's health. The issue with the heel pricks is the length of time they are kept which appears to be longer that to be of any value. Most parents are delighted that they can be of help in any development that improves the lives of other children

Dear Genny,

You seem to fail to grasp the issue here. This is *not* about a national policy. This is about Temple Street Hospital keeping records and private information without the owners (or their legal guardian) consent. To quote from the Times article on this issue: "The blood samples are stored at room temperature on cards with information including the baby’s name, address, date of birth, hospital of birth and test result." This nullifies your comment about the samples being used anonymously, if they are stored *together* with the private data. If this private data is not neccesarry than why is it stored? If I want my childrens blood samples or DNA being tested to "aid in diagnosis  or treatment" than I want to be asked for my explicit permission rather than implied consent.

The samples taken for babies at birth were taken with the only consent being that these were to be used for the PKU-test. Most parents do not even know that these were sent to Temple Street Hospital. There was no consent given for the samples to be stored together with private details in an database of sorts for an indefinite period. Apart from the lack off explicit permission this also raises other issues.
Who has access to this database? How (secure) is it stored? Will this be included in the recently announced Department of Justice database? etc. etc.

This type of behaviour is just wrong and runs roughshod over the rights of privacy of citizens. It must be stopped and it must be stopped now!

Evert.

P.S. For full disclosure. my identity is know and my details can be found online here: http://www.linkedin.com/in/evertbopp

Who are you? Both your IGOpeople & Twitter accounts are new and have only been set up after I posted my comments. You have no followers and only reply to my comments. Do I have to trace your IP address?

You say

The blood samples are stored at room temperature on cards with information including the baby’s name, address, date of birth, hospital of birth and test result." This nullifies your comment about the samples being used anonymously, if they are stored *together* with the private data.

You dont get it.... it is very easy to 'unlink' sample from patient data - it is done all the time in hospital Labs. You are getting all steamed up over the wrong issue. Anytime anyone has a blood test done the DNA is stored with patients details - practically everyone in the country has a blood test done at some time or another and the blood ie DNA is stored fully labelled with patient details. Most people have no idea how long the samples are kept and arenever told.The real issue is the length of time of storage which definitely needs to be addressed. I wouldnt believe all you read in the Sunday Times - the truth will out!!!

If I recall correctly, the hospitals are suspose to destroy the information after 2 years to redo serious tests if needed. However Temple Street can only destroy them when ordered to by the HSE. They got no orders so they didnt destroy it.

Genny,

That is exactly my point. I care less about the tests done with the samples than the fact that the samples are retained after their innitial (and consented) purpose had been carried out. I thought that this was clear.

Temple Street Hospital, or any other hospital, is retaining these samples without explicit permission of it's owner hence it is a blatant breach of privacy. The fact that you state that this is done with *all* blood samples and at all hospital labs shows you that this is a wider spread problem than most people realise. It is time that action is taken to stop this.

Don,

I am getting the distinct impression that the problem is wider spread that just Temple street hospital....

The problem is HSE. Temple Street did there job. The CEO of Temple Street cant destroy the records until ordered to.

Typical doublethink here:

"runs roughshod over the rights of privacy of citizens."

Followed by: " Do I have to trace your IP address?"

This is typical of the menace and bullying we see when somebody doesn't agree with the biggest knobs amongst the Twitterati. Next step - "we'll publish your picture and where you work."

If you're that concerned about the good these records can do, then pursuing retrospective permission would have been the way to go here, not behaving like a 1st year student union rep at a USI meeting. And why publicise your action  at all? Unless you're looking for notice. But then, with 40K tweets... It's all about YOU, isn't it?

I feel another Facebook group coming on.  Get a life. Or a job.

Oh look another person who sets up an anonymous account just to critisise me. I must be touching a nerve and sense a personal grievance here.

Calling the illegal retention of private details & DNA "runs roughshod over the rights of privacy of citizens." is hardly the same as asking someone who anonymously critisises me in a public forum to reveal their identity. But then again you don't reveal yours (even though I have a very strong hunch on who you are).

Really, this is a debate for grown-ups and I advise you to keep it like that and to take your infantile comments to where they belong

More than willing to discuss this in a grown up manner though....

Well it seems that my blood may be included in this and having spoken to my parents about it they, it seems, knew nothing about it either.

So thanks for Evert for pointing that out. 

Also, well done to the anonymous cowards too.