Posts Tagged ‘database’

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….

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The “story” about Temple Streets Hospital blood sample/DNA database 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 commissioner. The facts were clear and simple:

  • The fact that Temple Street Hospital retained blood-samples together with private details was illegal.
  • Temple Street Hospital never sought or received the explicit consent of the person whose samples and information they were storing, their parents or legal guardians.
  • The existence of this database was widely know within the HSE, other government departments & research institutes.

I requested at the time that Temple Street Hospital would notify me if my children’s details were part of this database AND that if they were that they would be destroyed. I received an email reply letting me know that my request would be dealt with and that they would be in contact. That was early January. We are now nearly two months later without any contact from Temple Street. I have since also set-up a website where people can submit similar request automatically.

Anyway, the story has just taken another leap. One of the cases often referred to when discussing the legalities of DNA databases is the case of the class action suit taken against the Texas Department of State Health Services. This very similar case led to the destruction of a large amount of illegally held DNA samples. Last week the Texas Tribune revealed some substantial new information regarding to this case. Their review of nine years’ worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program reveals the transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA.  The records, released after the state agreed in December to destroy more than 5 million infant blood spots, also show an effort to limit the public’s knowledge of aspects of the newborn blood program, and to manage the debate around it. But the plaintiffs who filed the lawsuit never saw them, because the state settled the case so quickly that it never reached the discovery phase.

Now while information like this is disturbing enough what really worries me is the striking resemblances given by the Texas Department of State Health Services why they initially compiled a database like this: “The core mission is to screen all babies for life-threatening disorders”. Without being overly sceptical this “it’s all for the little children’s benefit” excuse does not wash with me. Temple Street has admitted that on 4 separate occasions researchers were given access to the database and when asked if law enforcement officers were given access all they said is that they had received “requests from 2 agencies” but fail to state of in those case access was granted or refused.

So what we have now is information that proves the existence of several illegal (state held) DNA databases, compiled without the explicit consent or knowledge of the “legal owners” of the samples and information, and shared with other government department. Compare that with the public lies, misleading statements and lack of cooperation and it would make a damn fine episode of the X-files.

The truth is out there…..