When thinking about information transparency, one usually considers what information from some type of platform is made available to the user. In many cases, different platforms will tell users a lot about what they can see, and where the information or input the users put into the platform go. But is this the case with In-Home genetic testing like 23andMe or AncestryDNA?
These genetic testing kits have become increasingly popular over the years, especially since their main marketing tactic changed to giving users the opportunity to track their ethnicities or family ties rather than simply using the test kits to check for potential disease. I personally know people, some of whom I am related to, who have mindlessly used the kits in order to track their "true" ethnicity. This may seem harmless, but these organizations are not very transparent about what happens with the DNA sent to them.
As Luciano Floridi and Matteo Turilli stated in their article "The ethics of information transparency", information transparency can show whether or not a platform is abiding to the "ethical principles which they allegedly committed." There are situations in which these DNA testing organizations seem to have shared DNA results with those other than the sole user. For example, the Golden State Killer may have been found due to a DNA link one of these sites provided.
Though this debacle ultimately ended in the capture of a dangerous murderer, I believe that these DNA testing sights need to be more transparent about where they are sending test results, and where the DNA ultimately goes after being sent back from the user. If these organizations tell the potential users that their DNA will be stored somewhere for later use or can be shared with outside organizations, such as the government, their work may take a hit in sales but would also be considered more ethical by many.
As of now, the transparency of In-Home DNA testing kits like 23andMe and AncestryDNA is a little talked about but important topic, for many people are willingly giving up their DNA to who knows who due to the lack of information given out by the organizations.
I think this is a pressing topic, as many speculate that one of the next industry to be disrupted via emerging technology is biotech. We've gone through the information revolution and we know that during it, many of us knowingly and unknowingly gave up a huge amounts of data. Now that biotech revolution is near, will this trend continue where instead of giving up our internet data, we now give up our own biological data?
ReplyDeleteOn a separate note, when you quote the reading about platforms abiding to the ethical principles which they allegedly committed, its not quite clear what you're trying to argue there - perhaps bit more elaboration could help the reader understand how all this ties in with the readings.
I never really considered where the data from genetic testing would go, so this was an interesting read for me. I do think the issue of information transparency is not exclusive to genetic testing which your opening paragraph kind of suggested, as more often than not apps and social networking websites will also keep user data and use it for purposes the original user wouldn't be aware of in order to make more money. As someone not familiar with genetic testing and biological data, I would have liked to see more discussion about possible consequences of biological data being shared without my knowledge. In modern society, I feel like I have kind of accepted by now that my internet data will be tracked, and giving up my biological data doesn't seem to be worse unless I have committed a crime.
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