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.
American blog Southern Fried Science also covered the story, and did a really interesting post on why a DNA database is a very bad idea. Makes you think.
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?
I’m happy for the DNA to be kept. I would hope that it was used to confirm new findings that perhaps came from “hunches” about the association between some genetic condition and the solution to another health problem. For instance, if we discover in future years that people with cystic fibrosis can say- recover from burns more quickly than other people- researchers could look for links between the cystic fibrosis gene and new genes connected to skin recovery or de-oxidation. To do the groundwork they would be able to use DNA they already have access to and not bother live people until they have something more definite. Also, there is so much human genome of which we know nothing of its function, that a properly policed DNA database is a good thing to my way of thinking. Imagine looking back at kids’ DNA from birth after they have started suffering from juvenile diabetes and finding that parts of their current DNA are different- maybe finding how to PREVENT diabetes? I really can’t get paranoid about it- DNA is so difficult to research and it’s so difficult to prove links between DNA and brain and behaviour that I can’t imagine insurance companies wanting to get into it big time. If we DO find that many ordinary diseases can be detected at birth, making insurance against death or disability more difficult, who will insurance companies be able to get premiums from? How could they stay in business?
I agree that the indefinite storage of people’s DNA, especially without their consent and without anonymously labeling the sample, is improper. I’d like to think that The Man (government, insurance companies) is a bit too decentralized to be harvesting data about us from our blood smeared index cards, but people should be giving consent for storage of DNA samples that can be linked to their kids. I’m a bit relieved that my 4-year old daughter’s sample was only kept by the State of Ohio for two years. I do not remember ever being told that the heel prick sample would be kept for any length of time.
I just discovered your blog and really like it. I have found a real shortage of the pirate perspective among the sea of science blogs (pun intended).
Arrr! Cheers for the pun Mason, glad ye like me blog.
Yep- definitely get signed permission to store indefinitely and de-identify the sample with a confidential code, kept offsite.