UBiome co-founders are placed on leave amid FBI investigation into company

[bjl218]

https://www.statnews.com/2019/05/01...on-leave-amid-fbi-investigation-into-company/

This is just a "be careful out there" warning as there are some unscrupulous companies trying to get you or your insurance to fund them. My own story:

A practitioner I was seeing asked if I was interested in participating in a study uBiome was doing. I would get 6 uBiome kits in order to submit samples over time. This would be free to me. uBiome would bill my insurance and would assume all risk. In other words, they'd take what they could get from my insurance and I wouldn't be charged even if my insurance company paid $0 (which is what I assumed would happen). I was having some gut problems at the time (still am) so I figured why not? I submitted the first kit and got back the results. The results were interesting, but not particularly actionable.

Then I learned that they charged my insurance company almost $3,000! This is for a test that you could order yourself for $300-$600. Worse than that, my insurance company covered it at 80% which is the out of network lab coverage. As an aside, this is the same insurance company who denied my claim for a homocysteine blood test because it was unnecessary.

Needless to say, I didn't send in the remaining tests. I informed my practitioner who was completely shocked (I trust her completely) and I assume stopped doing business with them.

 

[pamojja]

Thanks for that information. Did you have to pay that remaining 20% or $600,- in the end?

Are you aware what they actually wanted to study with 6 consecutive samples? - Any dietary, supplement, pro-biotic or lifestyle interventions? - Or was it a fraud from the beginning, only created to generate illegitimate income?

The results were interesting, but not particularly actionable.

You can get more possible strategies by uploading your ubiome result to http://microbiomeprescription.azurewebsites.net

It is really sad that all major companies are in the hand of banksters. Just read 23andme sold data to big pharma (GlaxoKline). Also saw a discussion with Bill Gates at Stanford, where he seemed to constantly avoid questions about ethical dangers of AI with praising it's potentials. Again asked if he would see a danger of AI concentrating in the hands of very few corporations, he answered in the end most advanced AI would now be done by companies like Google in Peking - a country who already now use it against it's citizens.

 

[bjl218]

I didn't have to pay anything. No, I don't know what they were studying. I assume that they just wanted to collect additional data. They didn't provide information on any interventions.

 

[Wolfcub]

There indeed is some dirty work done out there in the world......

 

[ebethc]

It is really sad that all major companies are in the hand of banksters. Just read 23andme sold data to big pharma (GlaxoKline).

Do they sell the data anonymously, or w the users' names?

 

[nyanko_the_sane]

I almost fell for paying an out of state lab bill for a similar type of thing, They got as much money as they could from my insurance, then they tried to collect thousands more from me. I said no way. I heard how this particular lab was giving huge payouts to practitioners to get them to use their lab. Suffice to say there was a lot of excessive testing going on to charge up that huge bill. I never found out how much the insurance paid out before they said no more.

https://www.policymed.com/2014/09/o...d-testing-labs-for-kickback-arrangements.html

 

[pamojja]

Do they sell the data anonymously, or w the users' names?

https://www.google.com/search?client=firefox-b-d&q=23andme+sold+data+to+big+pharma

some quotes:

According to a blog post by the company’s CEO, Anne Wojcicki, customers can choose to opt-in or opt-out of studies at any time. Nevertheless, 23andMe says 80 percent of its customers choose to allow their data to be used in future research.

23andMe acknowledges the potential for security breaches on its website:

“Your genetic data, survey responses, and/or personally identifying
information may be stolen in the event of a security breach.
In the event of such a breach, if your data are associated with your identity,
they may be made public or released to insurance companies,
which could have a negative effect on your ability to obtain insurance coverage.”

Both 23andMe and Ancestry said that they will not share genetic information freely, without a court order, but people are welcome to share the information online themselves sometimes in order to find lost relatives or biological parents.

If you are uncomfortable with your DNA being sold to drug research or the possibility of a data leak, you can delete your DNA test results. Both sites have a step-by-step on deleting the data on their website.

I don't think for research it would make any sense to have your name. A data-breach or a court order would be a different scenario.

 

[vision blue]

@bjl218

Thatt's a pretty common markup on tests when they are straight to consumer vs. billed to insurance. There are sometimes much worse markups- for instance, genetic test you can get for 100 bucks on your own for say brca markers cost many thousands if you go thru clinical medicine.


In the link you posted, theyre not being taken to task for that part of it - the difference in amounts that direct consumers and insurance companies are being charged.

since youre insurance already paid, why not finish the series? the real reason not to actually is it will just waste your time. been trying for years now to squeeze info out of this microbiome approach, and so far no luck, at least not with ubiomes primers and techniques, and i've worked pretty hard at iit.

incidentally, i did one free one with ubiome - smartgut - it was in the early days and they were hopoing to build up a comparison database so that they could get their smartgut test all approved and charge insurance a fortune (which they have since done so). it was no better than the 80 dollar one you do on your own but i think costs 10 times more. (just did one with doctor's data , a test that would cost me 250 if i prepayed, but had it billed to insurance where i think its about 3,000. )

all these genetic (and every other) company tries for ways to make their fortune. Ubiome recently also went to bed with Loreal, the cosmetics company, for skin microbiome data. The latter hopes it can learn something that will help it sell more cosmetics, and the former of course is doing everything til it finds its pot of gold. all the other companies have done the same. ftdna ended up selling out to the fbi and other govt agencies, and as discussed, for 23 andme , it was eventually big pharma. ancestry.com has been working on a secret project for years- it uses the family trees people post in connection with the genetic datra to build the first ever united states mul;ti generational inherited disease database. (revolting that this is secret and people don't even know their data is going for this). all the companies try different things in the beginning to make their fortune. 23andme changed subscriptions for a while etc.

 

[bjl218]

@vision blue I didn't finish the series because I didn't want my insurance company to pay an additional ~$15,000 even though it would have been at no additional cost to me. The US medical insurance industry is very broken, but I'm of the opinion that I'd be compounding that by getting them to pay unreasonable prices for labs. Especially when those labs are of dubious diagnostic value and contain little actionable information.

 

[vision blue]

@bjl218 I misunderstood. I thought you meant insurance was billed 3000 dollars for all 6 tests and the milk was already spilled That would be a markup of 10 times compared to direct to consumer (usually one can get it for 300 during sales), which is a pretty common ratio. If it's instead $18,000 for a known $300 test , that really is major.

 

[bjl218]

Right. They billed my insurance ~$3,000 for the single test. So I assumed they would bill the same for each subsequent test in the series. Of course, there's the possibility that my insurer might have denied those subsequent claims.

@bjl218 I misunderstood. I thought you meant insurance was billed 3000 dollars for all 6 tests and the milk was already spilled That would be a markup of 10 times compared to direct to consumer (usually one can get it for 300 during sales), which is a pretty common ratio. If it's instead $18,000 for a known $300 test , that really is major.

 

[YippeeKi YOW !!]

@pamojja , @ebethc

Just read 23andme sold data to big pharma (GlaxoKline).

I was reading about this at least 6 or 7 years ago, which is why I've never done any genetics testing. All the usual sources (23and me, Ancestry.com, several others I cant remember right now) exploit all the content they can get their hands on in order to create multiple income streams in perpetuity.

Do they sell the data anonymously, or w the users' names?

There's no way to tell, but since insurance companies and large corporations would pay a kings ransom for this information, which would be useless to them if separat4d from the person's name for ID purposes, I assume that yes, your identity is included in the results that they sell.

I don't think for research it would make any sense to have your name.

See above. This isnt for research only, this is for big $$$ income, and they would provide any additional information they have, like your name, address, phone number, and emplyer if they have it, isfthat's what the buyer requires in order to close the deal.

It's disgusting, but that's life in the 21st Century on this slimy little ill-bred dive bar of a planet.