The DNA App Store - Get ready to use apps that have access to your DNA(and my thoughts on it)

 

A "flow cell" used for gene sequencing. Each "lane" contains a sample of patient DNA. Source: MIT Technology Review

   Yes. Now private companies will know things about you that you yourself don't know about...

    A startup called Helix announced that it would be creating an app store where users can let apps access their DNA. Basically, you pay the company to test your genome(and it has multiple tiers, some of which only sequence part of your genome), it holds that data, and allows you to use apps that have access to this data to, say, predict your sleeping patterns. About a dozen companies have apps available at launch. 

How it's described on Helix's website

    The technique that Helix uses to test your DNA is more expensive than that of other companies like 23andme, but extracts a lot more information that can be used by apps in the store(only the ones that you allow,i hope...). This technique, called DNA sequencing, was previously only available for patients with rare or abnormal medical conditions, but now, can also be used by normal, healthy people.

For example, this is a screenshot of the page of an app that uses your genome data to give you a custom 12 week training course for fat loss: 

My thoughts on it

    I went to their website, and while they do have a "How it works" page, it's pretty sparse on actual, useful information, with just a standard "We value your privacy" paragraph that all companies have. I think something like this really needs to be as transparent as possible. I think,ideally, health-related data needs to be encrypted and decrypted client-side, in the same way some privacy-focused messengers do it with our messages. Helix doesn't really say how they handle the user's data, although to be fair, client-side encryption is probably impractical for the amount of data they generate and store.

    Another potential issue, i think, is the possibility of ineffective apps that just end up doing nothing and steal your data. Now, in this case, there is one possibility, of the app being created with malicious intentions.But that's the easy case. What if the app was intended to legitimately do what it claims to do, but doesn't end up doing that in a certain section of users? What if the app has unexpected, negative side effects on the user's health(mental or physical)? Does Helix have a way to handle those kinds of disputes? I don't think so.They say that their team checks every app before it is put up on the store, but obviously there is no way to confirm that.

   Also, another problem i think, is these apps don't really have a lot of information about what they actually do with the user's data. I mean, DNA sequencing isn't really something that most people(including myself) know a lot about, but most of them have pretty sparse descriptions, and i saw no links to some other place that describes it more thoroughly. I think they should have added such a link. That would be a good way of being transparent, but also not confusing people who don't know a lot about this stuff.

   Although, to be fair, the app's page does show its impact and limitations, like in this case: 

   

    Finally, one problem that exists with any company that handles sensitive user data, is what happens to all this data when the company gets,say, acquired? There is a lot of fear among people that the insurance industry could use people's private medical information to deny them insurance. What happens, if say, Helix gets  acquired by an insurance company?

    Overall, while this is very exciting tech,i think the company needs to be more transparent(and ideally, use open source software and hardware) for people to trust it.If used correctly, technology like this could help save, and improve the lives of millions, the question is, WILL we use it correctly?

Sources:

MIT Technology Review Article: https://www.technologyreview.com/s/608313/a-dna-app-store-is-here-but-proceed-with-caution/  

App Page Screenshots from: https://www.helix.com/shop/dnafit-fat-burner  

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