The risks associated with personal genomic data being held by for-profit entities like 23andMe is a topic that has been brought up several times on Tildes. Here's the latest chapter, as 23andMe is...
The risks associated with personal genomic data being held by for-profit entities like 23andMe is a topic that has been brought up several times on Tildes. Here's the latest chapter, as 23andMe is sold to a pharmaceutical company. But don't worry, Regeneron (Nasdaq:REGN) promises to keep your DNA private despite their prior commitment to their shareholders.
I'm not even sure what means "private" in this context. Will they sell access to this data? Definitely. Maybe not directly as a "file" or "database" but in some way - definitely.
I'm not even sure what means "private" in this context. Will they sell access to this data? Definitely. Maybe not directly as a "file" or "database" but in some way - definitely.
I'm certain that in the lifetime of everyone posting here we will see harvested/sold genetic data used to legally deny people healthcare in some way. "Permission" will be granted through some...
I'm certain that in the lifetime of everyone posting here we will see harvested/sold genetic data used to legally deny people healthcare in some way.
"Permission" will be granted through some loophole backdoor to the data. Or through 500 page acceptance agreements gotten through duress like when you are being treated at your regular doctor.
Years ago a nutritionist suggested that some of the genetic tests 23andMe offered could be useful to back up something she found via a blood test. Having seen many TOS from other organizations...
Years ago a nutritionist suggested that some of the genetic tests 23andMe offered could be useful to back up something she found via a blood test. Having seen many TOS from other organizations change on a whim I looked for a way to anonymously pay for the tests. I could not and decided not to get the tests at all. Years after that 23AndMe began selling their data. I'm so glad I didn't get the test anyway.
I'm very conflicted on whether to send away for genetic testing. In theory, I love these sorts of things, and like you, there are some useful insights that could apply to me. However, I really,...
I'm very conflicted on whether to send away for genetic testing. In theory, I love these sorts of things, and like you, there are some useful insights that could apply to me. However, I really, really, hate the privacy implications.
On the other hand, my wife did it before we even met, and my sister has done it as well. So from that perspective, my kids and I have lost a good chunk of our privacy already.
I give the same advice to my family when they ask my opinion, but I have not been able to come up with an example scenario that they take as a serious threat. Insurance, service providers, or...
I give the same advice to my family when they ask my opinion, but I have not been able to come up with an example scenario that they take as a serious threat.
Insurance, service providers, or employers might discriminate based on genetic markers... Oh but there are laws against that! Not a problem!
Anyone who wants to do you harm for any reason could get access to that data if it goes up for sale... But how would they even use it against me? I don't see how that's even dangerous!
Well for example a despot President could take over the government and decide to imprison or deport anyone who matches some genetic profile... Oh come on but that would never happen! You're just being silly!
(rant) I believe it's the same fallacy again and again. "There nothing to hide if you are honest person." https://en.m.wikipedia.org/wiki/Nothing_to_hide_argument
My rebuttal to that is Brandon Mayfield. He was falsely accused and detained by the FBI of being behind the 2004 Madrid train bombings based on a partial fingerprint match. Totally ignoring he had...
My rebuttal to that is Brandon Mayfield. He was falsely accused and detained by the FBI of being behind the 2004 Madrid train bombings based on a partial fingerprint match. Totally ignoring he had an expired passport and there were no records of him even leaving the continent.
I first learned about him from a documentary in class. Not mentioned in the Wikipedia article, and the reason his story stuck with me: some of the "evidence" they used was his computer search history, which they twisted to fit their narrative. The specific one I remember was looking up Madrid in the weeks before the bombing, but the results they used were generally pretty innocuous. I believe it was also the family computer, so it wasn't just his search history.
Being an honest person doesn't mean much when people are actively looking for reasons to pin something on you. They'll use anything they can to fit the narrative they want. The truth doesn't matter to them.
Oh, that's actually a very good point. I, generally, agree, but somehow I feel more safe when companies have limited information about me. Mmm.. I think its because for me information is like a...
Oh, that's actually a very good point.
I, generally, agree, but somehow I feel more safe when companies have limited information about me. Mmm.. I think its because for me information is like a power or literally a power. More information allows us to make better decisions, therefore imbalance in information usually creates imbalance in power.
Heh. Thanks, now I better understand why I like privacy.
Upd: this imbalance especially crucial when you already have imbalance in power: person vs corporation, person vs govt, etc. etc.
Ask them which laws in which state that they can say are for sure protecting them? What about the other 49 states where the company could easily move their operations to get around various laws?...
.. Oh but there are laws against that! Not a problem!
Ask them which laws in which state that they can say are for sure protecting them? What about the other 49 states where the company could easily move their operations to get around various laws? Can you provide the law in at least the current state much less cross reference all 50 states?
The answers is always "I don't know but there are laws." Bonus Reaction: "I'm not going to waste time looking them up"
Personally I'd get whole genome sequencing rather than one of these crappy microarray based method, it's more expensive but it's the whole information so it can be reanalyzed in 10 years when...
Personally I'd get whole genome sequencing rather than one of these crappy microarray based method, it's more expensive but it's the whole information so it can be reanalyzed in 10 years when something new is found. Good services allows you to download the raw data so you have everything in your hands. Not too sure about privacy though.
There are definitely better options. If you express concerns to your family doctor/GP they can refer you to a genetic counselor who can help figure out what (if any) tests make sense based on your...
There are definitely better options. If you express concerns to your family doctor/GP they can refer you to a genetic counselor who can help figure out what (if any) tests make sense based on your genetic makeup and family history. Here in the US you could probably also do a provider search through your insurance company to find genetic counsellors whose services would be (at least partially) covered by your insurance. Of course they're probably unlikely to run general tests to tell you what your racial profile is and all the other entertainment value stats that people get excited about, but this is definitely a better option for someone who actually stands to benefit from genetic testing.
I did 23andMe because my mother died of Alzheimer's, and I wanted to know if I was a carrier of the higher-risk variant. I am not, but it does turn out I have a half-sister I didn't know about,...
I did 23andMe because my mother died of Alzheimer's, and I wanted to know if I was a carrier of the higher-risk variant.
I am not, but it does turn out I have a half-sister I didn't know about, because we were both sperm bank babies, which neither of us knew about beforehand. I can't ask my parents about it, because they've both passed.
I'm glad I know the truth, but it's been one hell of a ride.
I submitted my data deletion request a month or two ago, but I wish it didn’t have to be that way. I got 23andme when I was in middle school, so it’s interesting that I was allowed to make a...
I submitted my data deletion request a month or two ago, but I wish it didn’t have to be that way. I got 23andme when I was in middle school, so it’s interesting that I was allowed to make a choice back then that put my sensitive personal data at risk.
Does anyone know if 23andme actually did whole genome sequencing? That product woulda been like $2-10k depending on how they did it and probably would have taken months to get your results back....
Does anyone know if 23andme actually did whole genome sequencing? That product woulda been like $2-10k depending on how they did it and probably would have taken months to get your results back.
Last I checked they only did microarrays, which are very different, and could be anonymized in the same way that your internet browser information is ‘anonymized’
Yes, they only sequence part of it. I did it, and I have a backup of my (now deleted) data. It’s only partial. For people who knew what a full genome sequence was, it was never advertised as a...
Yes, they only sequence part of it. I did it, and I have a backup of my (now deleted) data. It’s only partial. For people who knew what a full genome sequence was, it was never advertised as a complete sequence. I have no idea if it can be anonymized though. It is still a lot of data, and it doesn’t take many unique markers for something to be mathematically unlikely to be another individual.
Honestly, a genetics company is probably one of the best scenarios for what could happen after they filed for bankruptcy. There are still major concerns about selling your data, but not quite the...
Honestly, a genetics company is probably one of the best scenarios for what could happen after they filed for bankruptcy. There are still major concerns about selling your data, but not quite the alarm bells as an insurance company or a chop shop company.
I am generally somewhat cavalier about what many people consider "privacy" but even I wouldn't touch these genetic testing services with a 900ft pole for exactly the reason that's happening right...
I am generally somewhat cavalier about what many people consider "privacy" but even I wouldn't touch these genetic testing services with a 900ft pole for exactly the reason that's happening right now.
On the other hand, if Regeneron are legit there is probably some interesting and potentially useful stuff to be mined from the 23andme data. Or y'know, sold for more profits.
The risks associated with personal genomic data being held by for-profit entities like 23andMe is a topic that has been brought up several times on Tildes. Here's the latest chapter, as 23andMe is sold to a pharmaceutical company. But don't worry, Regeneron (Nasdaq:REGN) promises to keep your DNA private despite their prior commitment to their shareholders.
I'm not even sure what means "private" in this context. Will they sell access to this data? Definitely. Maybe not directly as a "file" or "database" but in some way - definitely.
I'm certain that in the lifetime of everyone posting here we will see harvested/sold genetic data used to legally deny people healthcare in some way.
"Permission" will be granted through some loophole backdoor to the data. Or through 500 page acceptance agreements gotten through duress like when you are being treated at your regular doctor.
Years ago a nutritionist suggested that some of the genetic tests 23andMe offered could be useful to back up something she found via a blood test. Having seen many TOS from other organizations change on a whim I looked for a way to anonymously pay for the tests. I could not and decided not to get the tests at all. Years after that 23AndMe began selling their data. I'm so glad I didn't get the test anyway.
I'm very conflicted on whether to send away for genetic testing. In theory, I love these sorts of things, and like you, there are some useful insights that could apply to me. However, I really, really, hate the privacy implications.
On the other hand, my wife did it before we even met, and my sister has done it as well. So from that perspective, my kids and I have lost a good chunk of our privacy already.
Don't do it.
None of these places are trustworthy and I am sure you can imagine realistic scenarios where the information could be used against you.
I give the same advice to my family when they ask my opinion, but I have not been able to come up with an example scenario that they take as a serious threat.
(rant)
I believe it's the same fallacy again and again. "There nothing to hide if you are honest person."
https://en.m.wikipedia.org/wiki/Nothing_to_hide_argument
My rebuttal to that is Brandon Mayfield. He was falsely accused and detained by the FBI of being behind the 2004 Madrid train bombings based on a partial fingerprint match. Totally ignoring he had an expired passport and there were no records of him even leaving the continent.
I first learned about him from a documentary in class. Not mentioned in the Wikipedia article, and the reason his story stuck with me: some of the "evidence" they used was his computer search history, which they twisted to fit their narrative. The specific one I remember was looking up Madrid in the weeks before the bombing, but the results they used were generally pretty innocuous. I believe it was also the family computer, so it wasn't just his search history.
Being an honest person doesn't mean much when people are actively looking for reasons to pin something on you. They'll use anything they can to fit the narrative they want. The truth doesn't matter to them.
Oh, that's actually a very good point.
I, generally, agree, but somehow I feel more safe when companies have limited information about me. Mmm.. I think its because for me information is like a power or literally a power. More information allows us to make better decisions, therefore imbalance in information usually creates imbalance in power.
Heh. Thanks, now I better understand why I like privacy.
Upd: this imbalance especially crucial when you already have imbalance in power: person vs corporation, person vs govt, etc. etc.
Ugh! lol
Point them to an article of RFK jr wanting a national autism registry.
Ask them which laws in which state that they can say are for sure protecting them? What about the other 49 states where the company could easily move their operations to get around various laws? Can you provide the law in at least the current state much less cross reference all 50 states?
The answers is always "I don't know but there are laws." Bonus Reaction: "I'm not going to waste time looking them up"
Did you know? Laws can be changed in the future?
"You are just being negative"
Ok.....
Personally I'd get whole genome sequencing rather than one of these crappy microarray based method, it's more expensive but it's the whole information so it can be reanalyzed in 10 years when something new is found. Good services allows you to download the raw data so you have everything in your hands. Not too sure about privacy though.
https://www.dantelabs.com/products/whole-genome-sequencing
That said I work in the domain so I'm maybe biased.
There are definitely better options. If you express concerns to your family doctor/GP they can refer you to a genetic counselor who can help figure out what (if any) tests make sense based on your genetic makeup and family history. Here in the US you could probably also do a provider search through your insurance company to find genetic counsellors whose services would be (at least partially) covered by your insurance. Of course they're probably unlikely to run general tests to tell you what your racial profile is and all the other entertainment value stats that people get excited about, but this is definitely a better option for someone who actually stands to benefit from genetic testing.
I did 23andMe because my mother died of Alzheimer's, and I wanted to know if I was a carrier of the higher-risk variant.
I am not, but it does turn out I have a half-sister I didn't know about, because we were both sperm bank babies, which neither of us knew about beforehand. I can't ask my parents about it, because they've both passed.
I'm glad I know the truth, but it's been one hell of a ride.
I submitted my data deletion request a month or two ago, but I wish it didn’t have to be that way. I got 23andme when I was in middle school, so it’s interesting that I was allowed to make a choice back then that put my sensitive personal data at risk.
Does anyone know if 23andme actually did whole genome sequencing? That product woulda been like $2-10k depending on how they did it and probably would have taken months to get your results back.
Last I checked they only did microarrays, which are very different, and could be anonymized in the same way that your internet browser information is ‘anonymized’
Yes, they only sequence part of it. I did it, and I have a backup of my (now deleted) data. It’s only partial. For people who knew what a full genome sequence was, it was never advertised as a complete sequence. I have no idea if it can be anonymized though. It is still a lot of data, and it doesn’t take many unique markers for something to be mathematically unlikely to be another individual.
Honestly, a genetics company is probably one of the best scenarios for what could happen after they filed for bankruptcy. There are still major concerns about selling your data, but not quite the alarm bells as an insurance company or a chop shop company.
I am generally somewhat cavalier about what many people consider "privacy" but even I wouldn't touch these genetic testing services with a 900ft pole for exactly the reason that's happening right now.
On the other hand, if Regeneron are legit there is probably some interesting and potentially useful stuff to be mined from the 23andme data. Or y'know, sold for more profits.