Author Topic: And this is a good idea why?  (Read 2192 times)

Mynnion

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And this is a good idea why?
« on: March 11, 2017, 08:10:23 AM »
Can anyone explain to me why the GOP thinks this is a good idea?  All I see is a massive intrusion into privacy.

http://www.foxnews.com/politics/2017/03/11/gop-sponsored-bill-may-help-companies-obtain-your-genetic-information.html

Hypothetically my company finds out I carry a gene that increases my risk of a cancer that is extremely difficult and expensive to treat.  Since that could potentially increase the company's insurance costs I am now a liability.

cherrypoptart

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Re: And this is a good idea why?
« Reply #1 on: March 11, 2017, 01:14:53 PM »
I'm against it.

https://arstechnica.com/science/2017/03/companies-want-employees-genetic-info-new-bill-lets-them-take-it-by-force/

"Under HR 1313, GINA wouldn’t apply to anything voluntarily collected through wellness programs, and companies would have access to genetic data. That information would be stripped of identifiers..."

Just out of curiosity, what is the rationale for this for the company when the information is supposedly stripped of identifiers, at least as far as the company is concerned?

I guess I'm saying that I don't believe this part for a minute but assuming it's true that they didn't know who was at risk for what how would they use that information?


Mynnion

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Re: And this is a good idea why?
« Reply #2 on: March 11, 2017, 02:14:23 PM »
We all know how difficult it is to keep private information private.  Heck what's to keep the intel community from grabbing it?  What will be required for someone to access the information?  A court order?  Probable cause?  My guess is that the information could be extremely valuable.  I just don't buy any of the arguments in favor.

cherrypoptart

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Re: And this is a good idea why?
« Reply #3 on: March 11, 2017, 02:47:47 PM »
There's little to no doubt that the records will be compromised and first of all by law enforcement. I got a couple of DNA tests done for ancestry purposes and kind of joked with my brother and nephew that if they want to be criminals make sure not to leave any DNA behind because mine is already in a government database somewhere and they can use it to find you two too. But I wasn't that worried about it since I was in the military and they already have my DNA on file. I can ask for the DNA record that was only supposed to be used to identify my remains to be deleted but that probably just puts it into the higher priority files to be checked first. I seem to remember an NCIS episode where the military DNA system for remains was abused to solve a crime and that was made out to be a good thing. Maybe it is a good thing. But the point is, as the internet proves every day, as soon as there is a record of something on a computer there is no way to guarantee its security. If I had to guess as to an answer to the original question, I'd say that the GOP thinks this is a good idea to help build a DNA database of Americans for law enforcement purposes. They won't admit that's how they caught somebody but they'll use it to let them know which people to start looking at first. As we saw in Gattaca, using it for medical purposes doesn't usually make a whole lot of sense because of all the other variables involved, at least for most people, unless the science has advanced further than what is generally known.

Seriati

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Re: And this is a good idea why?
« Reply #4 on: March 13, 2017, 09:12:03 AM »
Well it's not a good idea, your right to privacy should outweigh any interest of the company in getting lower cost insurances.  Same way you shouldn't be forced to hook up a device to your car to let your insurance company monitor you.

On the other hand, most people would be willing to turn this over voluntarily.  If the program is permitted to provide discounts to insurance for those who do, is it really a negative?   At some point, insurance companies are going to assume that those who don't disclose have costly genetic disorders as a "baseline" and only discount after proof they don't exist.

We're kind of at a cross roads on insurance.  With mandates covering pre-existing conditions, to get anything less than rates that build in the costs of everything, we're going to have to prove health.

StefOrn

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Re: And this is a good idea why?
« Reply #5 on: March 13, 2017, 10:08:58 AM »
This is crazy! They are already following everything we're doing on our phones, over internet. They're tracking our calls, reading out messages... And now they want to gain access to our genetic information? I am against it! Mixed with f*cked up private medical care in the US it is a very bad idea!

TheDrake

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Re: And this is a good idea why?
« Reply #6 on: March 13, 2017, 11:26:30 AM »
Meh. Company wellness programs are NOT the same thing as company health insurance. They are, to the best of my knowledge, voluntary under law. They tend to offer employees cash subsidies for things like gym memberships with the idea that this will make the employee healthier - a net win for the company.

These programs already include a deep medical history, including family histories with respect to disease. The rules change proposed would simply allow employers to offer the genetic testing as part of that program, and treat it the same as all the other information employees are voluntarily handing over.

The article linked from Ars likes to describe incentives as penalties against employees who opt out? WTF? The company in this case is simply offering another form of compensation to their employees for an action they consider to be profitable.

There are some esoteric shady ways that a company might use the information by firing people who don't participate in the wellness program. That is currently illegal regardless of the inclusion or exclusion of genetic tests.

Personally, I've never signed up for a company wellness program partly out of a desire for privacy.

TheDeamon

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Re: And this is a good idea why?
« Reply #7 on: March 13, 2017, 12:06:00 PM »
Privacy concerns aside, assuming they can't disqualify based upon "preexisting conditions" there is a positive angle as well. If the insurance provider gets your genetic profile and determines you're at high risk for something, they can then shuffle you over to a treatment/management path for those conditions to either detect as soon as reasonably possible, or otherwise "manage it" before the condition fully develops. Potentially reducing costs for them in the long term, and improving outcomes for the patient. At least so long as the patient follows the medical advice given, and that advice is medically valid for their situation.

cherrypoptart

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Re: And this is a good idea why?
« Reply #8 on: March 13, 2017, 05:24:32 PM »
> Seriati

"On the other hand, most people would be willing to turn this over voluntarily."

> TheDeamon


"Privacy concerns aside, assuming they can't disqualify based upon "preexisting conditions" there is a positive angle as well."

This may seem weird but even though I'm against these tests being offered in any type of coercive manner because they are an invasion of privacy I myself probably wouldn't mind getting a free medical screening genetic test just to find out for myself what I'm at risk for and then look at my options for reducing that risk. I'm going to assume that everyone gets complete access to their own tests. I can completely understand though why people wouldn't want to get it. And for me even though I assume the government has access to my DNA test that's different from a company having it. Remember when Radio Shack would always harass you for your personal information even if you just wanted to buy a battery with cash? Well they ended up selling all of that personal information on their customers during their bankruptcy. So once this information gets onto a company's computer files, you've basically lost it and it may end up being sold or traded or just outright given away and you no longer have any say in the matter, and of course there is always hacking on top of that. This concern may be addressed and the company may provide some assurance that this wouldn't happen, but there's no way to tell what the future might bring.

Thanks for answering the question of how this could help the company though. They can give people treatment in advance, or at least caution on lifestyle choices, based on what the tests indicate may be their future challenges. They can also get further testing to see if what might happen based on their genetic profile is in fact already happening and thereby get early treatment on something they may not have detected until it was too late.

My suggestion would be to allow the employees to get this genetic test paid for by the company but the results would only go to the employees themselves and they could follow up with their own doctors as they see fit. Many of them might get concerning results and they can address them individually and privately so the company doesn't get to find out any of the information or build out a database of the results but the company will still save money on healthcare and insurance because most of the employees will use the information they now have to be proactive about their own health issues.

The only problem, of course, is that the companies doing this probably have more motives than they are willing to admit.

DJQuag

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Re: And this is a good idea why?
« Reply #9 on: March 13, 2017, 06:59:01 PM »
> Seriati

"On the other hand, most people would be willing to turn this over voluntarily."

> TheDeamon


"Privacy concerns aside, assuming they can't disqualify based upon "preexisting conditions" there is a positive angle as well."

This may seem weird but even though I'm against these tests being offered in any type of coercive manner because they are an invasion of privacy I myself probably wouldn't mind getting a free medical screening genetic test just to find out for myself what I'm at risk for and then look at my options for reducing that risk. I'm going to assume that everyone gets complete access to their own tests. I can completely understand though why people wouldn't want to get it. And for me even though I assume the government has access to my DNA test that's different from a company having it. Remember when Radio Shack would always harass you for your personal information even if you just wanted to buy a battery with cash? Well they ended up selling all of that personal information on their customers during their bankruptcy. So once this information gets onto a company's computer files, you've basically lost it and it may end up being sold or traded or just outright given away and you no longer have any say in the matter, and of course there is always hacking on top of that. This concern may be addressed and the company may provide some assurance that this wouldn't happen, but there's no way to tell what the future might bring.

Thanks for answering the question of how this could help the company though. They can give people treatment in advance, or at least caution on lifestyle choices, based on what the tests indicate may be their future challenges. They can also get further testing to see if what might happen based on their genetic profile is in fact already happening and thereby get early treatment on something they may not have detected until it was too late.

My suggestion would be to allow the employees to get this genetic test paid for by the company but the results would only go to the employees themselves and they could follow up with their own doctors as they see fit. Many of them might get concerning results and they can address them individually and privately so the company doesn't get to find out any of the information or build out a database of the results but the company will still save money on healthcare and insurance because most of the employees will use the information they now have to be proactive about their own health issues.

The only problem, of course, is that the companies doing this probably have more motives than they are willing to admit.

This is a nice story, if you ignore the viewpoint of those who fail the tests.

You're assuming that you won't die of some sort of cancer or other in five years. You're assuming that your kids won't come up positive for diabetes or something. But if they do, what then? Even if it's not your kids, what then?

I am absolutely on board with screening people and giving them preventative medicine. I am less on board on doing that in a system that doesn't do that but instead ejects them from the system.

TheDrake

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Re: And this is a good idea why?
« Reply #10 on: March 14, 2017, 10:43:12 AM »
I myself probably wouldn't mind getting a free medical screening genetic test just to find out for myself what I'm at risk for and then look at my options for reducing that risk.

So once this information gets onto a company's computer files, you've basically lost it and it may end up being sold or traded or just outright given away and you no longer have any say in the matter, and of course there is always hacking on top of that.

I had a genetic test done through 23andme.com for exactly that reason. I've kept the account live because they will give you updates as more research is completed. But now that you bring up the insolvency question - maybe I should rethink that!

Basically, I don't see the risk of a wellness program and that type of information as very different from the risk of using an Employee Assistance Program (EAP). One generally believes that these programs are firewalled from operations. You could research that, of course, but ADP would have a lot to lose if they got exposed sharing intimate details with the employers management.

These programs cover everything from alcoholism to financial difficulty.

Now, if you don't trust your employer, you could avoid those programs. But if you don't trust your employer, you are probably better off looking for a new job.

LetterRip

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Re: And this is a good idea why?
« Reply #11 on: March 15, 2017, 01:06:57 AM »
23andme unfortunately isn't very useful - they don't sequence enough times to ensure that your sequencing is accurate - so there is a high chance of false positives and false negatives.

Also I'm pretty sure that they aren't allowed to provide you much in the way of medical related updates anymore (ran afoul of the FDA).


LetterRip

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Re: And this is a good idea why?
« Reply #12 on: March 15, 2017, 02:05:12 AM »
Also they apparently aren't doing full sequencing - but rather genotyping - so they are only looking for specific small number of variants.  So even if they had 100% accuracy for the genes they test - they only test a tiny subset of the useful genes.  For instance BRCA (breast cancer associated gene) has 670 variants and 23andme only does about 5% of the more common variants.

TheDrake

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Re: And this is a good idea why?
« Reply #13 on: March 15, 2017, 11:15:42 AM »
Very interesting. Thanks, LR!

I did that quite a few years ago, and it also wasn't worth paying for a full lab test that might have been more detailed.

Good to know I haven't made any weighty decisions on the data.