I came across this article in last weekends Sunday Times newspaper. The article outlines how Dublin’s Temple Street Hospital has:
“built a database containing the DNA of almost every person born in the country since 1984 without their knowledge in an apparent breach of data protection laws”.
What has happened is that the hospital:
“amassed 1,548,300 blood samples from “heel prick tests” on newborns which are sent to it for screening, creating, in effect, a secret national DNA database”
The hospital is now under investigation by the Data Protection Commissioner who will possibly order that all these record will have to be destroyed if it is not satisfied that the hospital is taken all necessary actions.
“Clearly it is a matter of significant concern to us that holding data of this nature containing sensitive health details of such a significant portion of the population appears to have operated without taking account of data protection requirements,” said Billy Hawkes, the DPC commissioner. The issue of the justification for the holding of the blood samples for any period beyond that which is necessary to perform the initial blood test will have to be considered as part of this office’s investigation of this matter. At present the position would appear to be that there is no consent from parents for the information to be held at all.”
A hospital spokeswoman said the blood samples were being stored to help develop the screening programme and was in accordance with practices in other countries.
I have several serious issues with this DNA database and have voiced my concerns in a number of online forums. I have also contacted the DPC for advice. I was advised to contact the CEO of Temple Street hospital by email to determine if my children’s records were held in this database and if so to request that they be destroyed. I have done so but have not received a reply so far.
Now while I can understand the retention of the samples for the development of a screening programme, I do not see why the private details of each baby had to be retained. Surely statistical data (DOB, ethnic background, geographical location etc.) should be sufficient? I also have questions in how secure this data is stored and who has (and has had) access to it. As the database is defacto illegal I do not see it complying in either of these areas.
A “funny” thing happened though when I made a comment about this on Twitter. My tweets are posted to my profile on IGO. Within hours my comment was being criticised by someone who seemed to have an insider knowledge of hospital procedures. This person failed to grasp the essence of my objections and insinuated that by my objections I was showing a disregard to the welfare of sick children who could be helped by a database like this. What was interesting though was that this person set up an IGO & Twitter account only shortly after I posted my comments and only used these accounts to criticise my statements. Both accounts also gave no real indication as to who the person was. When I asked them to disclose who they are they preferred to go silent. I have my suspicion but will leave it to you the reader to draw your own conclusions.
Something else emerged from the discussions with this and other person though; apparently the retention of blood (and DNA) samples past the necessary period is allegedly commonplace in other hospitals and labs across the country. Also the procedure apparently calls for the HSE to order the hospital to destroy said samples before they are allowed to do so. Even though these rules are no excuse and do not supercede the applicable legislation it does indicate that at some level within the HSE there must be an awareness of the existence of these databases.
This issue is far from over for me and I will be posting regular updates to my blog. Keep reading!
BLITZKRIEG BOPP 
Sometimes I think we live in a good world. Life is beautiful, family is wonderful, and work is going well.
Then, then I read of this type of situation where obviously EVIL folks are working towards nefarious ends! Trying to build a full DNA Database of all children… which means within years they’ll have a full DNA Database of the entire population. (Probably their ultimate goal)
When I was a teenager I read ‘1984’ and ‘Brave New World’ and thought humans would NEVER allow such evil to come into the world.
Yet – here were are where people are confused in the voting booth – they don’t understand the difference between Free Will and Social Control. They fall for the fallacy of the liberal point of view, thinking the Liberals want to ‘help’ people. NOT.
Liberals want CONTROL – and this story fits right in line with that control. Under the guise of ‘helping the health of children’ – they are trying to take away personal freedoms, gaining more and more control toward their agendas.
Thanks Evert for bringing this story to mind. I’ll have to check our local hospital. My wife works there in Labor & Delivery… and I know they also do the ‘heel sticks’ on all newborns. Let’s see what they are doing with those results.
Scary, scary stuff!
We are all doomed. I am imagining hordes of government chimps secretly looking up my DNA profile everytime after I use the bog & their mega system auto-scans my urine. Seriously, these twits governing us cannot build a functioning health system after many years of spending copious amounts of money on it. I suppose another tribunal will be invented to investigate this?
Ireland’s never had a liberal government.
You do realise they don’t have a DNA database. They have the capability to build one but they don’t have one. A slight but important difference.
Who cares? Nothing wrong with having everyone’s DNA, it’s not like there are a great number of nefarious uses for the stuff.
Is this really such a big deal, or is it possible I am missing something!! Surely there are positives to be taken from this. Imagine the scenario where you, a family member or friend are knocked unconcious in an accident of some nature requiring emergency treatment. If the only records the hospital have of you are from birth and you were born with, Diabetes for example, the hospital would surely be better able to assess the most appropriate treatment for you in this case, by referring back to any information they have which may be useful. I don’t come from a medical background and the example stated above is purely “an example” I am curious as to why you feel such a betrayal of rights when all I can see is progression and possible improvement. I’m sure you have your own opinion and would be interested in your reasoning behind such strong views.
@Dave Nitpicking. They are unlawfully retaining the bloodsamples together with personal details. It’s illegal and needs to be stopped.
@Spud But that’s not the way this works or was intended to. In a case of an emergency it is already very difficult for any Irish hospital to get instant access to your medical records. Access to the type of database held by Temple Street hospital (and possible elsewhere) is non-existent and also useless. Blood samples & DNA would need to be analyzed first so that the data you are referring to could be made accessible.
However that is *not* the point here. The point is that these samples & the private information with them were never intended to be stored in a database. Period. For them to be allowed to be stored in a database Temple Street hospital (or any other organisation) would need the explicit consent from the owner or his/her legal guardian. The database itself would also be subject to the intricacies of the Data Protection Act and would have to be registered with the DPC. None of this has happened in this case.
That is all aside from my personal opinion on these type of databases…
There seems to be an underlying assumption that because there is a potential positive medical benefit then the law isn’t important. There are few more noble endeavours than helping to cure sick children, but it is rather unfortunate when we reduce a discussion on such an important matter to crass emotive appeals.
The establishment of a national DNA database is probably a good thing. However the law is clear and is there for the protection of all the rights off all. If you are going to collect and store personally identifiable data you must ask my permission, lettinge know the purpose for which you are gathering the data. You are obliged to only store the data for as long as is necessary to fulfil the said purpose. It seems that these basic data protection laws have not been adhered to, and to be clear; this is a criminal offence under Irish Data Protection Law.
The problem is that the DNA data is stored in a manner that it can be traced back to individuals who did not consent (through parents). One way around this is to remove all personally identifIable data. This does not overcome the fact that the data was gathered and stored illegally in the first place.
I’m still trying to understand exactly what the big deal is. Here is another scenario: a child ( or one of your children) is kidnapped and the abductor leaves behind a trace of DNA. This database now fasttracks the police investigation leading them directly to someone involved and one step closer to recovering your child. Bear in mind police / garda do not have peoples records until they have commited an offence, thus a first time offender can hide behind this smokescreen making it extremely difficult for the authorities to find/track such offenders. This could be precious time saved which could save a child’s (or your child’s ) life.Maybe this is a first step to analysing and storing such information, who knows? I accept the fact that relevant permissions should be obtained in advance, but see far higher benefits to be had from having such information and if it went to vote I would certainly be voting for. I wish we were not living in a world where upon you have to consider a scenario such as I have mentioned above but that is a reality. This is a second picture I have painted to try to show a benefit (in my opinion) and all I am hearing is that they were not allowed to do that and they did not follow protocol. Having posted two benefits (without giving it much thought) could you present benefits to not holding, or having such information. I’m not insecure about my information being held!!!
@Spud The reason why there is no (and should be no) database containing DNA of the entire population is that for the moment people are still considered until proven guilty. Hence there is no valid reason to store their DNA. The actions of a minority group (criminal offenders) should be no reason to infringe the privacy and liberty of the majority of the population (non offenders). My DNA/private details/whatever are my personal property and nobody has the right to obtain or retain these without my permission.
Another issue is that while the example of a child being kidnapped might make for popular argumentation a database such as you suggest could be used for all kinds of purposes if and when a government decides to. You might agree with what the lawbooks consider a crime in general but what about idiotic laws such as the blasphemy legislation? What if people who offended under that law (or other such moronic legislation) could be tracked by their DNA and prosecuted on the basis of that? Would you support it then? Or if laws where introduced that tax the drinking of soft-drinks (as is being discussed in the USA) and the government decided to pursue tax offenders by taking DNA samples from discarded cans? Ridiculous examples but you get my point I hope…
Hi Brendan,
Please don’t allow me to misrepresent my reasons for posting to this article. I am genuinely curious as to why ( apart from the legal standpoint) other people feel so strongly on this issue. I have merely expressed my opinion and certainly don’t pronounce myself to be a know it all. If there is an underlying reason why the general public should feel threatened by this which overshadows the couple of scenarios I have printed already then I welcome the education and take on board points which I may have overlooked. This is not an opportunity to “reduce a discussion on such an important matter to crass emotive appeals.” Mind your manners please. I render this important enough (having three children fitting the discussion point) to post my very first response to an area such as this, to purely observe responses and ask someone (once again) the question which no one has answered as yet: What benefits can you see to blocking such research. Do we know categorically why they are populating such information. Are there sinister motives in play, or are there cummulative factors that the general public may benefit from moving forward? If presented with such facts and use my right of opinion to go ahead and change my mind because, I have now been presented with valid reason then that’s great. I now know something I didn’t before and have a whole new perspective on something of which I previously held less understanding. I cannot dismiss your point on, this is the law, but law’s are written by humans and cannot always be correct in every sense of the word.They are constantly being amended and sub clauses being written to suit new and ever changing circumstances. For example, in many countries it is totally acceptable to change your name as long as it is not being done for unlawful or fraudulant purposes. Law’s are adapted to suit different situations. With such a database is it worth trying to find an explantion to the reasons behind it before condemning. Is it worth wasting resources to “uphold” the law when the reasons for such collection of data are unknown and, I emphasise the word, “could” be of far greater use, or help to you in the future. I don’t have those answers, don’t claim to have the answers and that is why I ask the question. What is so wrong with this and furthermore what benefits come from objecting to this??
I also am not understanding the specific issue here.
What is the specific issue you have with storing DNA evertb?
The issues you outline above point to some sort of conspiracy. If I put my conspiracy theorist cap on then possibly the government could do something useful/damaging with the information but otherwise I think it might actually be a good thing.
If I put my realist cap on I’d say they’ve already f**ked it up anyways.
Hi Spud
I am sorry that you have taken offence fromy comment. Certainly none was meant. The point I was trying to make, badly I see now, was that we should try to remove the emotion from such debates. For me, also with three children, this is a matter of privacy. I have no objection to the establishment of such a database. There would certainly be significant benefits in having such data to analyse. My concerns are purely on the matter of how this data has been gathered. Each of us by law is entitled to understand how information about us is used. If I was asked to permission and informed about how my children’s DNA data was to be used there is a fair chance I would have consented. But no one was asked or informed – this is my point at least.
I think Temple Street Hospital has a basic responsibility to ask for permission before saving anything from a patient.
And if they’re asking permission to hold DNA records, the permission slip needs to outline how the record can be expunged by the minor or the parent.
[…] database, the story grows. I recently wrote about the discovery that (since 1984) Temple Street hospital had retained all newborn bloodsamples […]
[…] that started at the end of December 2009 just keeps on getting bigger. I blogged about this in December and January and had contact with Mark Tighe, Temple Street Hospital & the Data Protection […]
One actual historic example:
In the cold war era, a bio-weapon was designed to “assassinate” a particular individual by unleashing it into the air of the general public area. In order for such targetted precision – a sample of that person’s DNA was first required.
This is amazing, and really open our minds about the future, All humanity will be screened for DNA samples and it actually may be useful to diagnose and cure some illness. Thanks for this useful post.
[…] Temple Street Hospital & illegal retention of DNA/blood samples. December 2009 19 comments 3 […]