Patient privacy and confidentiality in relation to DNA data under risk?

Gondwanaland

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https://www.foxnews.com/world/china-collecting-worlds-dna-sinister

Persons with ME/CFS are often very likely to get DNA testing. I was prompted to do so by what I read here on the forum. I had my DNA data extracted by 23 and me, then I had reports done by Interpretome, Promethease, Genetic Genie and NutraHacker. If any of those 3rd party companies have been acquired by ill-intentioned organizations, well, the harm is done.


So I would like to warn others about it. We should be very careful about giving out our DNA and personal medical records, as we don't know whose hands that information falls into, and what it is used for.


Knowing my SNPs didn’t change my symptoms, and investigating symptoms was much more helpful than doing what’s is recommended on the internet for a specific SNP… The symptoms include reactions to environmental issues that are not in our genes.
 
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It's been pretty open secret that most of the retail DNA testing sites are extremely lax regarding client confidentiality, and who they allow to access their usually voluminous records. Which is why I haven't applied to any of them, especially 23andMe, for DNA testing.

Thank you @Gondwanaland for your views on the actual value of all those genetic results. I've felt like I was cheating myself out of possibly life-changing information by avoiding the providers and you've made me feel much better about my sort of Luddite reluctance to trust anyone with that much sensitive info about me ...
 

Paralee

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I put it off the testing because of privacy until I read on a forum that if they (they? meaning insurance co's, medical facilities, on and on) want your DNA it's no problem to get it. The forum member (and TV) said that once they get that blood from a test or whatever it's theirs, to do with as they please.

Also, have you been in the position to have to fill out a questionnaire about your family's medical conditions? I don't mean just how they're related to you, I mean they want names! Oh yeah, and I had to sign a form that they have the right to audio or video you in your appt, etc. or waiting room or where ever. Somehow that kind of made the DNA significance sorta go down for me.:xeyes:
 
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Oh yeah, and I had to sign a form that they have the right to audio or video you in your appt, etc. or waiting room or where ever.
YIKES !!!! And " .... oh, for flucks sake !!! .....'
Somehow that kind of made the DNA significance sorta go down for me.:xeyes:
Understandable. That's beyond intrusive, and even oversteps the boundaries of Big Brother ....
 

Sledgehammer

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I had my DNA test carried out in 2017 for ancestral footpath's only.
The company that carried out my test knows nothing about my medical history, and my GP knows nothing about my DNA test so I believe.

What had me annoyed more were emails once in a while suggesting I join up to the family link programme.
No thanks, sounds like data gathering to me, similar to your cell phone contact list going out to the tech companies.

The T&C's state my data is protected [until hacked :p] and it's my responsibility what happens with that data if I decide to download the test results.
 
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and it's my responsibility what happens with that data if I decide to download the test results.
Wait up !!! Lemme see if I'm understanding this blatant abrogation of responsibility correctly ....

You purchased a product from them, you paid them for it, but if you download it for your own use, say, AFTER they've been hacked but before they bother to tell their clients, it's all on you ???!?!???!!
The company that carried out my test knows nothing about my medical history, and my GP knows nothing about my DNA test so I believe.
Uh .... yeah. Right. Totally trustworthy company ....

I'm in my bitter, jaundiced mode today :meh: :rolleyes::rolleyes:. Apologies .....
 

Sledgehammer

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It's a get out clause since we wouldn't be able to prove if their servers had been hacked. When I say hacked I mean when they get I.T to drop the security and let the data slurpers in :)

Haha, you're correct, about as trustworthy as the other data slurpers out there.
And with all these lawsuits taking place a splap on the hands won't deter the data collection.
 
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