Think twice before analyzing/releasing your genetic data
jacquesmattheij.com
Think twice before analyzing/releasing your genetic data
1–10 of 46 posts
Re: Think twice before analyzing/releasing your genetic data
#2This is very helpful advice. I had considered publishing my DNA from 23andme after seeing others had posted their genetic data. I am really glad, I didn't and think its quite important that you consider others (including your siblings + kids) before publishing such data.
Update: Thanks po. I hadn't really considered the risk of submitting data to 23andme in the first place. Updated the title to reflect this as well.
OT: Despite knowing this, I am sure I would have tried the service anyway. However, after seeing the data, I haven't found it too helpful. Probably, because most of their data is based on older Europeans and I don't fall in that category.
Re: Think twice before analyzing/releasing your genetic data
#3I had the same thought when considering sending DNA to 23andme, which is a US company. Having your processed DNA in some database exposes you to a lot of potential risks with little upside.
Re: Think twice before analyzing/releasing your genetic data
#4This is very helpful advice. I had considered publishing my DNA from 23andme after seeing others had posted their genetic data. I am really glad, I didn't and think its quite important that you consider others (including your siblings + kids) before publishing such data. Update: Thanks po. I hadn't really considered the risk of submitting data to 23andme in the first place. Updated the title to reflect this as well.…
I think jacques is taking it one step further and suggesting that you think twice before even submitting your data to a company like 23andme at all. It's an interesting point. I'm trying to think of what kind of privacy policy would cover all possible nefarious uses of that data. I think it basically would have to be one like "We won't give your data to anyone except you, even in aggregate and in the case we go out of business or are bought, we will destroy all of the data."
Re: Think twice before analyzing/releasing your genetic data
#5Fascinating point about parents — knowing their genome means you could in principle know the entire potential configuration space of all their (real or hypothetical) offsprings' genomes.
Re: Think twice before analyzing/releasing your genetic data
#6I had the same thought when considering sending DNA to 23andme, which is a US company. Having your processed DNA in some database exposes you to a lot of potential risks with little upside.
Is it not possible to ask them to delete all my DNA data? My subscription will end soon, can I just ask them to delete it completely in a clear worded email to make sure there is no misunderstanding as to what I mean by "deleted"? Will EU laws protect me from this or are they irrelevant since they are a US company?
Re: Think twice before analyzing/releasing your genetic data
#7This is not an issue in the US. The Genetic Information Nondiscrimination Act makes it illegal for insurance or employers to discriminate based on genetic information. See Wikipedia for more: http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi...
Considering how easy it is to get ahold of someone else's DNA and the potential advantages of genetic testing, I think it makes more sense to push for anti-discrimination laws instead of avoiding genetic testing.
Re: Think twice before analyzing/releasing your genetic data
#8There are more positive sides than negative about sharing genome information. For reference, check out: http://www.personalgenomes.org/ - smarter than us people have already donated their fully-sequenced DNAs (23andMe, Navigenics, deCODEme, and others don't sequence your full genome for now). Paranoia never leads to progress! Anyway, there's a law that you cannot be discriminated by insurance companies and employers with your DNA. Also, with ObamaCare in 2013 you can't be turned down for insurance either. And medicine's only chance for significant breakthroughs is through genomics. And, last, but not least: my DNA is mine and nobody else's, so, if my children and grandchildren have an issue with me sharing my own genome, sorry, but enjoy what you've inherited and quit whining, bastards!
Re: Think twice before analyzing/releasing your genetic data
#9This is not an issue in the US. The Genetic Information Nondiscrimination Act makes it illegal for insurance or employers to discriminate based on genetic information. See Wikipedia for more: http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi... Considering how easy it is to get ahold of someone else's DNA and the potential advantages of genetic testing, I think it makes more sense to push for anti-discrimi…
Except those laws won't do anything to prevent abuse. It's the same as with tracking data, really: the only way to prevent abuse is if there is no data to be abused in the first place. You're severely deluded if you think laws will prevent the abuse of this data, much less discrimination based on it.
Re: Think twice before analyzing/releasing your genetic data
#10Oddly enough, this is similar to publishing social data.
If I upload my address book to Google, they can see who I know. Often who I know is also who knows me. Without the people in my address book's consent, I and my friends have collectively published the information for people who have opted out.