When thinking about information transparency, one usually considers what information from some type of platform is made available to the user. Typically, platforms will tell users a lot about what they can see, and where the information or input the users provide for the platform go. Despite this, many platforms, such as certain social media services, are much more vague about where personal information is sent One type of platform that has specifically interested me as of late is in-home genetic testing kits such as 23andMe or AncestryDNA. Do these test kits make it clear where users DNA is sent, or are they more vague about the information dispersion similar to some social media platforms?
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." Relating this to In-Home genetic testing kits, it seems that these organizations are committed to keeping results private, but they do not always come out and state this.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. At a first look, these organizations are providing a service solely to the providers of DNA. But based on examples like that of the Golden State Killer, it seems that a service is also being provided to outside parties that the original users lack awareness of. If there is another party involved, the providers of the DNA need to be clearly told this when first using the service.
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 due to the lack of information given out by the organizations.
You should try to draw your reader in. Provide a captivating introduction, a sentence or two. You should also look into images that can support your arguments. This will also help attract readers. A well place image or two can do a lot as support for the main piece. You should also talk more about your arguments on the ethics of this topic and not just summarize what the genetic testing companies are doing with the users DNA. Maybe talk about how these companies can provide mire information on what they are doing with the DNA.
ReplyDeleteAlthough I agree with Sean above, I thought this was a really engaging blog post! It sounds a bit formal, I think it could really benefit from a stronger sense of your voice and pictures, but I thought you brought up some interesting points about DNA testing. I've always wondered what at home DNA tests do with our medical data, but I've never even thought about what these companies do with our data. Do they really just throw away viles of spit? These companies need to be transparent if they want to succeed in an increasingly conscious time (in regards to privacy).
ReplyDeleteAdditionally, it would've been interesting to hear a little more analysis about the reading. I felt like this was a good example, but your post didn't provide much more.
Hi Joseph,
ReplyDeleteTrying my best not to repeat anything said above.
This is definitely a very interesting and new problem, as in-home DNA testing kits weren't really a thing until this past decade. Maybe you can talk a little bit about how this changes daily life, or your relationship with your own biological data?
I'm going to suggest that you look a bit into the facts behind the Golden State Killer's case. From my own research, 23andMe has a privacy policy listed on their website, and they're pretty clear about asking for consent. The database in which the Golden State Killer was identified was through GEDmatch, a site in which people voluntarily upload their profiles to match with other users' profiles. Nothing here is taken without consent. Investigators used the Golden State Killer's DNA to create a fake profile, in hopes of finding somebody with similar DNA, who has voluntarily made a profile on their site. This doesn't mean your article is nullified, though. You should read in on GEDmatch's wikipedia page, as it addresses the ethical issues raised regarding law enforcement having access to these public databases.
Overall, this is a very interesting topic, and even if you have to pivot a bit, there is a lot to talk about.