Genetic Testing Companies Sell Your DNA, All Promise Of Privacy Is Bunk

[Badger]

If they have a warrant for your DNA, they don’t need a 23andMe report to get your DNA.

True, but cops sometimes bend rules. Getting it from 23andme without a warrant is another avenue to do it.

 

[Badger]

DNA services is a new field ripe for lots of scamming:
I paid $300 for DNA-based fitness advice and all I got was junk science
I paid $300 for DNA-based fitness advice and all I got was junk science

 

[Seleniodine]

Lots of ads running on TV now "get your dna test for thanksgiving/holidays" so you can find out you are related to the people you already know you are related to !
Whoopee! Lots of fun for the whole family and it's on sale!

 

[Badger]

This article provides some guidance on which DNA tests to use:
Your Guide to Getting Sequenced: A handy chart for sorting out many of the options in DNA analysis.
Your Guide to Getting Sequenced – NEO.LIFE – Medium

 

[lollipop]

More concerns surfacing:

DNA tests may be a big seller this holiday season. Will you be giving away too much?

 

[CarbAppreciator]

Every newborn has blood taken and dried on a card... so that DNA is already on file, the thing with these companies is that you are giving explicit consent for the data to be used.

 

[lollipop]

Every newborn has blood taken and dried on a card... so that DNA is already on file, the thing with these companies is that you are giving explicit consent for the data to be used.

Hi @robknob, interesting. Do you know when this practice began?

 

[CarbAppreciator]

Hi @robknob, interesting. Do you know when this practice began?

You'd have to look up how it's done in the state you were born in, some states claim to destroy the samples after a few weeks.

 

[Amazoniac]

charliezord and Such, if you happen to read this, it's impressive: I opened that Duolingo image on a Twitter link and guess what appeared on my email the next day..? I never receive anything from them.

 

[x-ray peat]

Oh man, that is so scary. 1984 was nothing compared to this.

You're right; it's more akin to Brave New World. In the words of Aldous Huxley, we are being conditioned to enjoy our servitude. Much cheaper that way than the old school brute force methods.

 

[charlie]

charliezord and Such, if you happen to read this, it's impressive: I opened that Duolingo image on a Twitter link and guess what appeared on my email the next day..? I never receive anything from them.

 

[Steven Bussinger]

Are you serious?! It is already being done. Insurance companies contract a third-party which does risk assessments and sells them a "score" of how risky you are. So, the insurance company is in the clear as they are not directly discriminating you, they just buy a risk assessment service. It is being done as we speak for life insurance

You really don't see how this can get awry?? I mean the same thing happened with the NSA warrantless wiretapping - collecting sensitive information on you and the people you call/text. The government said this data is so secret that it can only be used for terrorism investigations. And then it turned out NSA started sharing this data with local law enforcement to bust people without probable cause. They even told the prosecutors to concoct stories about how the evidence was obtained because it is illegal for NSA to share this data for law enforcement purposes.

If they have a warrant for your DNA, they don’t need a 23andMe report to get your DNA.

This is just alarmism. Per Haidut's own admission, DNA testing only further enables practices that are already employed. It's not like you sidestep all this bull**** just because you didn't spit into a tube. Insurance companies could just as easily give you bad marks for not having any DNA on record.

Likewise, is there a point to be worrying about what real things the authorities can discover when they can just as easily make it up? This has happened to many people. For instance, how do you defend against them planting CP on your hard drive? There are ways to do so, but are the costs that such paranoia requires worth it to you? Furthermore, are you actually that important to them to care at all?

By all means, do what is simple and easy for you to protect your privacy, but do not get fooled into thinking that having privacy makes you untouchable. It just makes their job a little harder.

 

[haidut]

This is just alarmism. Per Haidut's own admission, DNA testing only further enables practices that are already employed. It's not like you sidestep all this bull**** just because you didn't spit into a tube. Insurance companies could just as easily give you bad marks for not having any DNA on record.

Likewise, is there a point to be worrying about what real things the authorities can discover when they can just as easily make it up? This has happened to many people. For instance, how do you defend against them planting CP on your hard drive? There are ways to do so, but are the costs that such paranoia requires worth it to you? Furthermore, are you actually that important to them to care at all?

By all means, do what is simple and easy for you to protect your privacy, but do not get fooled into thinking that having privacy makes you untouchable. It just makes their job a little harder.

No it isn't. The only thing stopping insurers (so far) from doing full on DNA discriminatory pricing right now is the Genetic Information Nondiscriminatory Act. But it does not cover all angles (see below) and it is already being circumvented by using third parties, because this way the insurance company never sees your raw DNA. They just get a genetic composite risk score from that third party and use it in their own formulas.
https://www.economist.com/news/fina...y-about-adverse-selection-insured-worry-about
"...But tests might also help insurers. Christoph Nabholz, from Swiss Re, a reinsurance giant, is most excited about tests that spot early signs of cancer or cardiovascular disease. For life and health insurers, who want to keep people alive and well, such information could be invaluable. Discovery, a South African health insurer, plans to offer customers a test that maps part of their genome. The focus is on “actionable data”, where medical intervention or lifestyle change could mitigate risk, explains Jonathan Broomberg from Discovery."

"...So regulations today often protect consumers from the mandatory disclosure of predictive tests. But the rules are patchy. In Britain the industry has agreed to a blanket moratorium, renewable every three years, on using predictive genetic information. The sole exception is Huntington’s chorea, where a test of one gene is infallible and has to be disclosed to an insurer for life cover worth more than £500,000 ($662,000). In America the Genetic Information Nondiscrimination Act bans health insurers (and employers) from using such results, but is silent on other types of insurance. In several countries life insurers may already ask for disclosure of predictive genetic tests for policies over a certain value."

"...Some regulators, such as Germany’s, have outlawed direct-to-consumer tests. But nothing stops Germans from ordering from abroad, and, just as it became normal for life insurers to ask for family history, so insurers will surely eventually have access to relevant genetic information. The question will be what they are allowed to do with it. When blood tests for AIDS first appeared, insurers also fretted about adverse selection. Many jurisdictions ruled they could not be used for calculating health premiums, as these were a basic good, but could be used for life policies. As genetic testing spreads, society and insurers may face many similar difficult assessments."

https://www.npr.org/sections/health...-of-insurance-can-discriminate-based-on-genes
"...There's a federal law that's supposed to protect people from having their own genes used against them, the Genetic Information Nondiscrimination Act, or GINA. Under GINA, it's illegal for an employer to fire someone based on his genes, and it's illegal for health insurers to raise rates or to deny coverage because of someone's genetic code. But the law has a loophole: It only applies to health insurance. It doesn't say anything about companies that sell life insurance, disability insurance or long-term-care insurance."

"..."It would be a natural thing that people might consider if they find out that they are at an increased risk for Alzheimer's disease. This is a logical outcome to getting genetic-risk information," Green says. But when people go make that "logical" decision, there's nothing stopping the insurance companies from demanding to see the results of their genetic test. In fact, a long-term-care company could legally require someone to take a genetic test before selling him a policy."

"...A spokesman with the company Genworth, the largest seller of long-term-care policies in the U.S., said in an email to NPR that it doesn't want to lose its ability to "utilize all information." Genworth isn't restricted by the law now, and it doesn't want that to change."

 

[haidut]

Every newborn has blood taken and dried on a card... so that DNA is already on file, the thing with these companies is that you are giving explicit consent for the data to be used.

Only if you consent to it. We refused this test for both of our children precisely for that reason and of course both times faced a s**t storm from the medical staff. But once you start mentioning things about gene expression, metabolism, methylation, etc they usually leave you alone One of the nurses that we talked to actually seemed generally interested and convinced the head nurse to buy MK-4 instead of the K1 given to newborns as injection. As far as I know they still use MK-4 instead of K1 unless the parent asks for K1 explicitly. So, I want to believe that all these arguments led to something good...

@lisaferraro

 

[haidut]

You'd have to look up how it's done in the state you were born in, some states claim to destroy the samples after a few weeks.

Very few states delete it, most keep it. In addition, copy of the sample is sent to a federal database maintained by NIH. That database does not delete anything and has been running ever since 2003-2004. You don't even want to know who has access to that database...And I don't mean the 3-letter agencies as this is given. I mean private companies most of which are fronts for either pharma or insurance conglomerates.
So, if you have a child in the future I'd suggest refusing to submit the child to that test. You are allowed to refuse, it is not mandatory (yet).
My bigger worry is not that database because it is only for newborns and it is still relatively small. The bigger concern is what do LabCorp and Quest do with the samples your doctor sends them every time he/she takes your blood. Under current terms of service, those companies are allowed to run any test they want on your blood sample, including DNA analysis. I suspect they get to keep the data after throwing the sample away (if they ever throw it away). So, the DNA information of most Americans is probably already collected and waiting for the highest bidder.

 

[Fractality]

What I find interesting is that insurance underwriting practices utilize models that we know to be erroneous. Apparently, this doesn't seem to affect their bottom line (that we can tell). For instance they follow the "high cholesterol bad" "HDL good" "genetic determinism" models but we know those actually don't necessarily predict someone's longevity. Perhaps they are lucking out and these associations they look for are still catching the unhealthy people with higher mortality risk.

 

[goodandevil]

Only if you consent to it. We refused this test for both of our children precisely for that reason and of course both times faced a s**t storm from the medical staff. But once you start mentioning things about gene expression, metabolism, methylation, etc they usually leave you alone One of the nurses that we talked to actually seemed generally interested and convinced the head nurse to buy MK-4 instead of the K1 given to newborns as injection. As far as I know they still use MK-4 instead of K1 unless the parent asks for K1 explicitly. So, I want to believe that all these arguments led to something good...

@lisaferraro

Whats the advantage of mk4 over k1, carboxylation?

 

[haidut]

Whats the advantage of mk4 over k1, carboxylation?

K1 has to be converted to MK-4 in the body in order to be useful in tissues. MK-4 is the form humans use directly in tissues. So, K1 is more of a pro-vitamin similar to how pyridoxine Hcl is a pro-vitamin for pyridoxal-5-phosphate (P5P). With aging, our ability to convert K1 into MK-4 declines. That is why in Japan the prescription drug Glakay uses MK-4 only. There is evidence that only MK-4 is beneficial for the bone and that feature probably extends to other organs. K1 does have anti-coagulant effect but that's probably it.
https://blogs.webmd.com/integrative...t-vitamin-k1-is-helpful-for-bone-density.html

 

[lollipop]

Only if you consent to it. We refused this test for both of our children precisely for that reason and of course both times faced a s**t storm from the medical staff. But once you start mentioning things about gene expression, metabolism, methylation, etc they usually leave you alone One of the nurses that we talked to actually seemed generally interested and convinced the head nurse to buy MK-4 instead of the K1 given to newborns as injection. As far as I know they still use MK-4 instead of K1 unless the parent asks for K1 explicitly. So, I want to believe that all these arguments led to something good...

@lisaferraro

WoW...fantastic! Go @haidut - goes to show that people working for institutions can care and do the right thing. I am telling ALL my friends having children to opt out of the testing.

 

[x-ray peat]

What I find interesting is that insurance underwriting practices utilize models that we know to be erroneous. Apparently, this doesn't seem to affect their bottom line (that we can tell). For instance they follow the "high cholesterol bad" "HDL good" "genetic determinism" models but we know those actually don't necessarily predict someone's longevity. Perhaps they are lucking out and these associations they look for are still catching the unhealthy people with higher mortality risk.

great question. I would think they can get away with that because high cholesterol is often caused by hypothyroidism. So even though they have the mechanisms all screwed up they still are making a good insurance decision by charging more for high cholesterol people. Of course we really dont know what they are doing to figure out their rates and may just be saying one thing publicly while doing something else in secret.