My Not So Private DNA Test
March 24, 2008 8:30 PM
Filed Under: Mikenomics
How secure is my data going to be once my genotyping results are ready? Good question and it is one asked on Dr. Robert Runte’s blog. Guess I’m the guinea pig for this project and I’ll find out one way or another.
Looking through the information on the website for the 3 projects I can’t honestly say if the security more or less robust than any other commercial site. 23andMe has a page dedicated to their privacy information (https://www.23andme.com/legal/privacy/ ) and it goes to great pains to talk about how the information is used and stored. As a matter of course I always empty the cache, browsing history, etc of my browser and both 23andMe and deCODE’s (http://www.decodeme.com/information/privacy )privacy sections explain their cookie policy and suggest you be aware of caching issues.
They also point out that if you choose to share your information, that is your business and they cannot be held responsible for the outcome. In my case, I will be sharing a great deal of the information so I’ve already made some choices. I’m also guessing that they are freeing themselves from any problems if your tests show that you really are not the son or daughter of who you thought you were. If your family is entering into this brand new world of genetic testing and you are comparing results with each other, it certainly could happen and you better be prepared for such gems to pop up.
The DNA Ancestry Project policy does not appear to be laid out in quite the same detail as the other 2, and they leave you to your own devices when it comes to finding their privacy policy online. In the end, I had to use Google to find it because it simply wasn’t obvious looking at their site but you can take a look at it by going to http://www.genebase.com/term.php .
I think I’m as safe on the 3 sites as I would be on any GOOD online banking or retail site.
However, I’m not sure I agree with all of the concerns that have been raised, probably because I’m not one see the government lurking around every corner. What would a hacker really gain from my DNA information? Tell the world I have the gene for attached earlobes or let everyone know that I am predisposed to contract Multiple Sclerosis? Not much in it for the hacker as far as I can see. I suppose they could sell the information but as long as I’m dealing with reputable insurance companies and live within a health care system that has solid policies on how it collects information I feel relatively safe.
I also believe the 3 companies when they say the information may be used as part of a statistical aggregation but that there will be no personal information attached. In fact I fully support the idea that the information is used in this way because the more samples you have, the better the data set.
No, quite frankly it isn’t the hacker that have me looking over my shoulder. Instead it is the spectre of even cheaper genetic tests that could make it mandatory to have the test before your insurance premiums are set or before you get the final nod on a new job.
There are lots of privacy concerns – no question. We have some great researchers as part of our GE3LS project (Genomic: Ethics,Environment,Economics, Legal, and Society) and I’ll certainly be getting their opinions over the coming weeks.
Posted by Mike Spear at March 24, 2008 8:30 PM