Posts Tagged ‘hse’

dna

I received an interesting email this afternoon. It was from Mark Tighe a journalist with the Sunday Times. It read: ”

Did you see the ads in the papers today from the HSE? They are finally going to destroy the heelprick samples older than 10 years.”

This brought me back to a blogpost I typed up just over 10 years ago. At the time it had been discovered that Temple Street hospital had been retaining the bloodsamples it had gathered through the “heelprick” tests. This had resulted ina n *illegal* database of genetic material of  everyone born in Ireland since 1984. It goes without saying that this is not only highly un-ethical but also illegal. You can read my blogpost on the topic here.

While I am pleased with today’s announcement it still raises a few questions. Apparently the screening programme was revised in 2011 and for anyone born after that date the parents have to give explicit permission for the sample to be retained. Additionally all samples will be destroyed after 10 years. The announcement also says that all samples taken between 1984 and 20o2 will be destroyed this year as they are over 10 years old. That still raises the question of the samples which were taken between 2002 and 2011 (when the programme was revised). These samples will apparently be illegally retained for another 1 to 8 years….

Another issue is that when I researched the matter three years ago evidence emerged that the retention of blood (and DNA) samples past the necessary period is allegedly commonplace in other hospitals and labs across the country. I have yet to see a follow up investigation to locate other hospitals where this practice is or has taken place.

Either way, it’s good to see that after three years some steps in the right direction are taken….

On November 10th Ireland will hold another referendum. Referendums are getting nearly as popular as tribunals with the 2 Nice Treaty referenda, the Lisbon Treaty referenda,  the  “ESM treaty” referendum and now a Children’s rights referendum. I had hoped to avoid blogging about the latter but the matter is too serious and the spin from the “yes” side to thick to ignore it any longer.

You see the proposed constitutional amendment (to articles 42.A.4.1 & 42A.4.2) is being proposed as means to better protect the rights of the children in cases of neglect, abuse, or a combination of these. This is to be achieved by giving the state more power to (forcibly) remove children from their parents custody. Even if this is against the wishes of both the parents AND the child. The state will be able to come and take children out of their homes and forcibly put them up for adoption. If they deem that there is enough reason to do so.

Article 42A.2.1: In exceptional cases, where the parents, regardless of their marital status, fail in their duty towards their children to such extent that the safety or welfare of any of their children is likely to be prejudicially affected, the state as the guardian of the common good shall, by proportionate means as provided by law, endeavour to supply the place of the parents, but always with the due regard for the natural and imprescriptible rights of the child.

Now who can find something wrong with that? Surely its all to the betterment of the rights of the child right? Wrong!

Let’s take a closer look at the parts I’ve highlighted; First of all there is the reference to “the state as the guardian of the common good”. Call me a cynic but I have so far seen very few states where this “common good” was an unequivocal and unilaterally accepted principle. Au contraire, “common good” is an as ambiguous principle as possible. So if we enshrine in the constitution that the state is  the guardian of this ambivalent condition than we basically give carte blanche to future governments to interpret that at will. Secondly there is the suggestion that the state “supply the place of the parents”. That is not only wrong but also biologically impossible. The definition of parents (according to Dictionary.com) is “a father or a mother”. The state is not only genderless, it is also an abstract entity. While the state can assume guardianship over children they can never be “parents”. Including that term in the proposed amendment is equal measures wrong and insulting. It is impossible for the state with even the best intentions to provide the quality of care for a child that a parent will provide. Lastly there is “”proportionate means as provided by law”. This is a change from the “appropriate means” term in the current constitution. What it means is that the state will not stop at this change in the constitution, the use of the term “proportionate” means they will have to enshrine these constitutional powers in law. This gives them increased powers to enforce these amendments on you.

What also offends me that there is clear mention of the increased powers of the state, the amendment makes no mention of the right of parents. Instead it actually erodes the rights of parents to raise their children in a responsible manner as they see fit. Instead it puts parents in a position where they are accountable to the state for how they raise their children. This is only an intellectual hop and a skip from the state deciding how many children parents are allowed to have or what religions are “preferential”. Lets just note that the Irish state’s record in this area is far from examplary. The reprehensible levels of child abuse that took place in Irish institutions in the previous decades took place after the state put the children in these institutions. Even now the country’s health care system, the HSE, let nearly 200 children die while they were in its care. And the Irish people are now supposed to give this same state more CONSTITUTIONAL powers on a promise that the system will be changed?! Sounds like a cart before the horse approach to me.

Several years ago I had a “experience” with the HSE’s department of child protection that did little to instill confidence in their abilities. At the time someone who lived locally and who I was pursuing for a substantial amount of money owed decided to get back to me by hurting it where it hurts most; my children. What happened is that they made an anonymous phone-call to the local childrens protection office accusing my wife and myself of neglecting our children. As it emerged later the extent of this “neglect” was laughable. Apparently our children sometimes attended school without the sufficient amount of pens, pencils, copybooks or not wearing a complete uniform. Hardly abuse but it was enough to put the HSE machine in motion. The first thing that we learned of it is when we received a letter making us aware of the anonymous complaint and notifying us that a child care worker would visit us for an inspection in two weeks time. Now if we had been abusive parent those two weeks would have given plenty of time to hide any and all signs of abuse and/or neglect. In our case we had done nothing wrong (anyone who knows us is aware that we ALWAYS put our children’s welfare first). and the letter caused so much upset that we were not willing to wait two weeks for any further clarification. What we did instead is contact the HSE and demand they send an inspector to our house ASAP! And preferably without any notice.

Next we contacted the primary school which our children attended to discuss this with the schools principal.Her relief when we spoke to her was immense. Apparently the HSE had contacted her when the complaint was initially made to verify the accusations. She had vehemently denied these and made clear to the HSE person that we actually took very good care of our children and that they were smart, and pleasant children. However this was not enough for the HSE, in spite of the fact that the allegations had now been refuted by a reputable 3rd party. She was instructed *not* to discuss the matter with us and that the HSE would investigate the matter further.

The inspectors visit was rather uneventful as it was obvious that the complaints was without both without any basis and made maliciously. However rather than dismiss the case we received a notifications several weeks later that the investigation was closed “due to lack of supporting evidence”.  As you can imagine this whole affair was a far from pleasant experience and we are far from happy with the way it was handled.

However considering all that I am of the opinion that if the HSE had, at the time, the powers that the proposed constitutional amendment would give them it would have gone far different. It would make it likely and legal for the HSE to remove children from parental custody while a case is investigated. And to do so without informing the parents of the exact details of the case. This is already common practice in the UK where even the family court cases are being held in “secret”.

There is also the case of “common good”. Take the example of recent large scale vaccination programs. Take the case of the H5N1 (avian flu) outbreak. In a panic measure a vaccine which had only had limited trials was pushed on the general public. Everyone was strongly “advised” to vaccinate not only themselves but more urgently their children. Based on our own research we decided that the risk of being injected with a largely untested vaccine was greater than the risk of contracting Avian flu. Looking back we were correct as several side effects have manifested while the number of actual infections with the virus have been minimal. Then there is the case of the mass vaccination of pre-teen girls with the human papillomavirus vaccine to prevent cervical cancer. Vaccination programs were organised through schools rather than voluntary through doctors practices and as nobody wants their children to develop cancer we allowed our two eldest daughters to receive the vaccine. As it now expires it not only can cause premature ovarian failure, it also only protects against 2 out of 5 possible strains of the cancer.

Anyway, my point is that increased power to the state would put them in a position to say that vaccinations are in the name of the common good (in fact they have already said so) and to force parents to either have their children vaccinated or to take the children into custody.  If you think that’s crazy thinking then I advise you to check Minister of Social Protection statement recently where she hinted that vaccinations could be tied to child benefit payments and or school admittance. Where I come from that’s called a “worrying development”…

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I recently wrote about the discovery that (since 1984) Temple Street hospital had retained all newborn bloodsamples submitted to it for the purpose of the PKU/heelprick tests. That means that they have a database of people born in Ireland since 1984! This is an estimated 1.54 million people. This was all following an article in the Sunday Times on December 27th 2009.

The Sunday Times ran a follow up story on January 6th. Their research discovered that “external researchers” had been given access to the database on at least 4 occasions. It has also become clear that at least one request from an “agency” for access to the database was received.

This raises two immediate questions:

  1. If the database was illegal and/or secret how come external organisations were aware of its existence.
  2. If access was granted to “external researchers” did money change hands over this?

I am pursuing this matter further and am in the process of submitting a number of FOI requests and will post results in this blog when I receive them.

However I have also decided to put up a website similar to the one run by the CountMeOut campaign. This website will allow people to send a standard email to Temple Street & the HSE requesting to be notified if their or their children’s data is contained in this database and if this is the case to request that the data is destroyed.

However as I am not a web developer & have not got the time to learn this I am looking for a web designer who will assist me with this on a pro-bono basis. The site is going to be fairly simple and mostly text based but it needs to have a backend that can submit the completed form (via email) to 3 different email adresses simultaneously.

So if you’re a web developer willing to help with this please send me an email!