Who Owns My DNA?

If a DNA testing company gets bought out, what happens to their customers' DNA? Image by Molly Eyres. / CC BY 2.0

One niggling worry I had when I decided to get some genetic testing from 23andMe was what would happen to my DNA if the company failed. By all accounts, 23andMe is a very healthy company* so it was more of a theoretical worry for me. Not so for deCODEme folks…

Like 23andMe, deCODEme looks at hundreds of thousands of different areas of a customer’s DNA in order to predict that customer’s future health and provide information about his or her ancestry and traits. This week deCODEme’s parent company, DeCode Genetics, filed for bankruptcy. Press reports indicate that parts of the company will go up for auction. I am not sure if that includes deCODEme but I am sure all of their customers are sweating it out right now.

The big question now isn’t whether these people will still get good service from deCODEme. Instead it is what the company that buys deCODEme will do with all those customers’ DNA. Will they maintain deCODEme’s previous privacy policies? Or, in the worst case scenario, will they connect DNA to name and sell the combination to the highest bidder?

I have to say that at first I was a little panicky when I started thinking about this. Especially when I started to contemplate what my health insurance company would do to me if they got a hold of my DNA.

Everyone has some genetic problems lurking in their DNA and I am sure that insurance companies would be happy to limit or even drop people’s coverage based on this. The new health care reform bills are supposed to prevent an insurance company from dropping someone based on a pre-existing condition but I am not sure if something like this counts. If it doesn’t, then I would probably end up with a policy that doesn’t cover conditions my DNA says that I am more likely to get. (Very useful insurance!)

If the new bill does consider potential risks from our DNA a pre-existing condition, then this isn’t really that big a worry. Except that I bet the new bills allow the insurance companies to jack up someone’s premiums based on their pre-existing conditions. In which case they’ll charge me so much I’ll have to drop my coverage anyway.

The other possible uses for my DNA that I could think of paled in comparison to this one. For example, I don’t think I’d mind if they sold my DNA to a pharmaceutical company so that the company could make a useful drug. Or to academics so that my DNA could be used to learn something about the human genome. It seems like those are sort of noble purposes for my DNA, kind of like donating it to science.

I couldn’t really think of much else that other companies might do with my DNA. Of course if the health insurance scenario were to happen, that would be plenty bad enough.

* Especially since one of the cofounders, Anne Wojcicki, is married to Sergey Brin, Google cofounder.

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