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How to Protect Your DNA Data Before and After Taking an At-Home Test

27 points by t23 6y ago

nerbert 6y ago
Would a dna testing company based on Europe offer better data/privacy protection?
- rjzzleep 6y ago
  Germans would tell you no, but as a person who worked in German healthcare I'd say that the reason you never hear about leaks in Germany is because they wouldn't even know if it happened. Approvals are all done in paper form and are extremely easy to forge and the IT systems in place similarly to the US equivalents are so antiquated that they wouldn't even notice if there was a large leak happening. In the UK you can walk into a lot of hospitals IT room and just plug stuff in without noticing. So no, basically nobody will protect your privacy other than yourself(which oftentimes is not possible). The main difference is that it's a little bit harder for private big tech to get access to your data, so if that is your concern you will have a little bit better protection there. However it's worth noting that even though German is considered one of the countries with the toughest data protection laws, they're not actually enforced for public institutions and that the current health ministry has been pushing hard to make unanonymized data available to insurance companies.
orastor 6y ago
Or even better, buy it on a separate retailer, like Amazon, and then sign up with a made-up name
- Spooky23 6y ago
  Better still, don’t do it.
meowster 6y ago
You can't protect your DNA once you take one of these tests. If a relative takes it and uses their real identity, then it can eventually be associated with your identity. Even if you never take the test, but a relative does, your privacy is compromised. The best thing you can do is ask your family members not to take it. Hopefully none of you are crimimals, but it just goes to show: > Law enforcement famously used crime-scene DNA that was shared with a genealogical research site to track down a suspect in the Golden State killer case, even though he never used a DNA test himself.

27 points by t23 6y ago

nerbert 6y ago

Would a dna testing company based on Europe offer better data/privacy protection?

rjzzleep 6y ago
Germans would tell you no, but as a person who worked in German healthcare I'd say that the reason you never hear about leaks in Germany is because they wouldn't even know if it happened. Approvals are all done in paper form and are extremely easy to forge and the IT systems in place similarly to the US equivalents are so antiquated that they wouldn't even notice if there was a large leak happening. In the UK you can walk into a lot of hospitals IT room and just plug stuff in without noticing. So no, basically nobody will protect your privacy other than yourself(which oftentimes is not possible). The main difference is that it's a little bit harder for private big tech to get access to your data, so if that is your concern you will have a little bit better protection there. However it's worth noting that even though German is considered one of the countries with the toughest data protection laws, they're not actually enforced for public institutions and that the current health ministry has been pushing hard to make unanonymized data available to insurance companies.

orastor 6y ago

Or even better, buy it on a separate retailer, like Amazon, and then sign up with a made-up name

Spooky23 6y ago
Better still, don’t do it.

meowster 6y ago

You can't protect your DNA once you take one of these tests. If a relative takes it and uses their real identity, then it can eventually be associated with your identity. Even if you never take the test, but a relative does, your privacy is compromised. The best thing you can do is ask your family members not to take it. Hopefully none of you are crimimals, but it just goes to show: > Law enforcement famously used crime-scene DNA that was shared with a genealogical research site to track down a suspect in the Golden State killer case, even though he never used a DNA test himself.