Originally published at: How to delete your 23andMe data - Boing Boing
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How to protect your DNA from falling into the wrong hands?
Don’t give it to companies where you and your DNA are actually the product seems like a good start.
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"In a place where any cell from any part of your body can betray you, how do you hide when we all shed 500 million cells a day?
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The most frustrating part is that this is true of everyone since the company likely has enough information to build a partial genetic profile for you based on DNA from your relatives even if you and your immediate family wanted nothing to do with the company.
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. . . Umm . . . Err . . . Ahh . . How can I say this? . . .
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I feel like you’re referencing a joke that I was amazed got past the network’s censors in an old Simpsons episode:
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Yep, my situation exactly. Siblings signed up, I did not. I will warn my sibs but don’t think they will take it seriously. Anything I can do to protect my own privacy?
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That’s one I missed. But definitely one of the directions I was thinking.
Also . . . Keep your hoohah out of the wrong hands.
Or . . . Which is the wrong hand??
I could go on, but the point is made.
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Support legislation to protect your privacy and ownership of your personal data. And vote for candidates who support such.
Probably not much more than that. Sadly.
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The privacy thing has been a huge concern for me for a long time. Glad i never used any of these services/companies, but is there one that would be worth looking at?
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Some hospitals will offer DNA analysis for things like rare diseases, likelihood of developing a condition, etc. They generally say they won’t share your DNA, and because it’s explicitly medical, I tend to believe it. That said…
Hospitals in the US tend to be owned by corporations, and therefore can be sold. The two “not that great” hospital systems in my area are in the process of being bought by worse corporations, so I’m sensitive to the issue. No idea how the new owners will address or respect previous privacy issues.
We haven’t taken up any of our doctors on DNA testing (though they obviously get our blood every year, so…???)
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Also stop all your family members from giving their DNA and therefore, essentially, your DNA… 
But if they have already done it, how is the situation recoverable? Seems like your DNA is already in the wind.
New user here. I have been enjoying boingboing for a long time. Serious question here. A couple of years ago I did both 23andme and ancestory to find my biological parentage. I am adopted. I found the information I was seeking. I am not interested in what they do with my dna. I have committed no crimes and I don’t intend to. DNA won’t bite me on the ass for murders or rapes. Why should I care? I have insurance. I am in my 50s so any pre-existing conditions are already in full bloom. I don’t know why I should worry about this. Please advise.
BTW there are many websites that I follow and enjoy the comments section. I have never until now signed up to comment.
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It’s good that you got the information you were looking for but lots of people learn things from DNA ancestry tests that they’d prefer not to become public information traded on the open market.
For example, imagine you’d learned that your biological parents were a father and his daughter. Would that be something you wanted to become public? Even if you personally didn’t mind, would it be fair to make that decision on behalf of all your biological relatives, including the birth mother who might have spent her life trying to keep it secret?
Then there are all the medical privacy issues; you might end up in a GATTACA-style situation where your genetic profile started determining what kinds of opportunities you got in life based on risk profiles and such. Or if not you, then your biological relatives.
Remember, when your DNA goes into a publicly accessible database it has implications for other people too.
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Protection of genetic material reminds me of What We Do In The Shadows
Most of my immediate family gave our DNA to 23andme to be tested and found out what we were seeking. In hindsight, I wish I had spent $25 more per test for the Ancestry results. Either way, we now know our kids have 20% indigenous heritage and my wife 40%, and I now, finally, have validated that I have 0% caucasian heritage—if I only had a box to check for Northwest European. But, can I trust the moms and pops that set this company in motion in an attempt to improve our knowledge about each other? Not sure. In any case, I for one am glad you decided to speak out about this and hope you will keep sharing your perspectives. In doing so, you might learn, and you might teach.
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It such a sad ending…
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It pretty much comes down to either discrimination, or exploitation. Imagine if companies found out through your family’s DNA that you have certain health risks and that was used to deny insurance coverage but you’re not told that was why you were denied. Or imagine that your genetic data was used as a way to determine if you’re a good hire. Or lets say that there are sociopolitical reasons why someone might not want the government to know they might be part of an ethnic group due to persecution, or i could see in the near future companies using your genetic data to market things to you that you might not want publicly known, etc.
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The biggest risk, it seems to me, is a more general one. Data, any data, except perhaps Brent Spiner’s beloved screen and film character, once it gets out there, can go pretty much anywhere without your permission. All the data privacy promises in the world mean bupkus after a server hack/data breach, or after a new company comes in and rewrites the terms of service, or after so much of your seemingly anonymized data is out there that it can be recombined and used to point right back at you. Once data is out in the digital wild, there’s virtually no possibility of recapturing it and erasing all other copies, and once it’s out there you have no actual control over how it might be used in the future. As of this moment, you might not have any conception of how it could be used in a way that might work against your best interests, but that doesn’t mean that such ways might not exist in the future. We’re doing things with data now that nobody even dreamed of twenty-five years ago, so imagine what today’s far more plentiful data will be being used for twenty-five years from now…
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