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…..