DNA from newborn babies is being routinely screened for genetic testing, and in some cases the sample is kept indefinitely.
Last December a Dublin hospital was found keeping a DNA database in secret and is now under investigation. In the USA and Australia they don’t need to do it in secret, they have government support. Hell, it’s legislation.
Between two and three days after birth, blood is collected from a heel prick and sent for analysis for several genetic diseases, including cystic fibrosis. In Australia, you can say “No” to testing, but it is strongly recommended. I don’t really have a problem with testing, it could potentially identify serious diseases early and let you start treatment early. It’s what they do later that bugs me.
In Australia the blood is kept on a screening card indefinitely in a secure facility. Some groups are allowed to access them, the most alarming of which are the police “when no other sample is available” and ethics-approved health research.
Several Victorian hospitals are researching a written informed consent project to improve parent’s understanding of the screening process. It’s a great idea. Honestly, I can’t believe this was not required from the beginning. People CAN opt out of testing, or can have the screening card returned to them after two years… but how many KNOW that they can do that?
In America the rules change between states as to how long the records are kept, and here’s a list for 2010. In California, Michigan, and Minnesota they are kept indefinitely, as is the case in Florida where it recently became the subject of a CNN report.
For me it brings back my pirate paranoia built upon the wreck of so many X-Files episodes and a dim (but now flaring) belief that the government harvested everyone’s DNA when giving the worldwide smallpox vaccine, and have been documenting newborn DNA ever since. But that’s me. Hopefully it’s not that bad. Yet.
I’m blown away by it, what are your thoughts? Are you concerned or do you think I’m being a bit paranoid? Is there something we can do? Is the time for activism nigh?