British Columbia’s Newborn Screening Program Infant DNA Database

Posted: January 17, 2011 in Canada, Civil Rights and Privacy
Tags: , ,

In one episode of the old conspiracy series The X-Files, Mulder and Scully stumble across a vast collection of DNA samples in an old mining building. Mulder surmises that the government has collected a sample from every single American citizen born since the 1940s, using the smallpox vaccinations as cover. It’s fine conspiracy fare but something too massive to ever happen in real life. Unless, of course, you happen to have been born in British Columbia, Canada, in the past 20 years.

It emerged in 2010, as part of a new class action lawsuit, that the government of British Columbia takes samples from every newborn in the province (800,000 and counting, so far), without the parents’ consent, telling them as cover that the blood is being routinely tested for evidence of hereditary disorders. That’s what’s behind the innocuous name of the so-called “Newborn Screening Program.”

Those tests do take place, but the blood isn’t discarded afterward. Instead, the dried sample on an index card goes into a large database which the B.C. Civil Liberties Association says is simply a massive violation of privacy. Program director Hilary Vallance says the program is much more benign, even beneficial. She even says the program would be useful if someone wants to retest the DNA they were born with later in life, after developing a disease they think might be hereditary.

This is fairly dubious given that, to my knowledge, your DNA doesn’t exactly change over time. If you wanted a new sample, it’s only a quick needle stick away. In the meantime, the government is left with a database that it makes available to researchers and, when required to do so, law enforcement. I’m sure the RCMP, the organization which sold Maher Arar down the river to the Americans and whose members were caught trying to cover up what they did to Robert Dziekanski at Vancouver International Airport, can be trusted with our DNA.

Unfortunately, because I’m covering this story a year after it surfaced, it’s too late to know whether the BC Children’s Hospital or the Newborn Screening Program altered their websites after the database was covered in the press. At the time, there was apparently no disclosure of the use of the database. Now, both note that you can now have your DNA eliminated from the database by submitting a formal request. You can let Professor Vallance know what you think, too.

The fact that routine genetic screening can now forewarn us of trouble in our DNA is not a problem — actually, it’s a very good thing. The fact that a government laboratory is clandestinely using that process to build a database for medical researchers (and possibly law enforcement), without fully notifying the parents of the children, is a much more serious problem. I imagine none of these “volunteers” have yet been compensated for participating in a medical research project, unlike, say, the researchers themselves, who tend to be very well compensated.

No documents seem to have surfaced yet (at least in the public domain — contact the BCCLA for information in the litigation), but coverage is available from the BC Civil Liberties Association, CBC News, and the Globe & Mail (at Statism Watch).

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