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FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

91–100 of 195 posts

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#92
post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

I obviously don't understand the specifics, but if they are later owned by someone else, is that new someone considered a third party?

For instance, doesn't this mean that a hypothetical future 23andMe drowning in debit could be acquired by a company who could use the data for all sorts of terrible things without ever technically selling it to a third party?

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#93

Earlier quoted context omitted.

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

I obviously don't understand the specifics, but if they are later owned by someone else, is that new someone considered a third party? For instance, doesn't this mean that a hypothetical future 23andMe drowning in debit could be acquired by a company who could use the data for all sorts of terrible things without ever technically selling it to a third party?

I'm pretty sure that is exactly how it will work, laws be damned.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#94

Earlier quoted context omitted.

Presumably most (98% isn't it) of our DNA is the same thought, right? About 98% of our DNA does just makes an ordinary human body with normal systems. So we're only interested in the 2% that can vary . Or whatever the actual numbers are.

A single error in the very large part of DNA that shouldn't vary per individual but "makes an ordinary human body with normal systems" means that you don't get an ordinary human body with normal systems. Many such errors cause non-viable embryos, but if you have survived up to this point, then such a difference is still quite likely to have a meaningful impact to your health and is precisely the part that you'd want…

That's right. I'm suggesting the average diagnostic test need only concern itself with those areas of the genome that are know to contain mutations that result in pathologies.

I think you said the same thing but in a clearer way.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#95
post #86

Earlier quoted context omitted.

I actually did some market research on creating a service to use 23andMe anonymously because of this worry (I'd call it 32andYou). Essentially the user could pay the service, and then the service would pay 23andMe. At higher paying plans you could pay for the swabs to be sent to a 32andYou shipping address so that 23andMe doesn't even have your mailing address.

A friend of mine did this when he used the service. Used the office of an acquaintance as his address, a fake name, and paid with a pre-paid Visa card that he bought in cash.

Is there a blog post or other written thingy that your friend has made to do this? I would love to know the step-by-step so I could repeat it.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#96
post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

Yes, that's exactly what they are saying. That's how they make money. And if that concerns realize that your doctor sells your EMR data, your pharmacy sells your prescription data, the labs sell your blood work data too.

https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data to https://www.promethease.com/ for interpretation.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#97

Earlier quoted context omitted.

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

The "individual-level information" limitation is a huge weasel. 23andMe can and does share "anonymized" aggregations of its clients' genetic information [0]. Anonymization is not a property of a dataset though; it's a property of a dataset and the state of the world, and even if (and this is a big if) the dataset is truly anonymized right now, it won't always be. [0] "23andMe says that it is also able to share anonym…

Well said. Genetic data is by nature personally identifiable, and genomic disaggregation techniques can be expected to improve. Data troves like 23 and Me are an attractive target for DNA dragnets - at present, their SNP data is not CODIS-compatible (although it is theoretically possible that the SNAP data could be queried against a physical sample assayed for the same SNPs), but the physical samples are very valuable and customers should inspect their sample retention terms very closely.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#98

Earlier quoted context omitted.

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

I obviously don't understand the specifics, but if they are later owned by someone else, is that new someone considered a third party? For instance, doesn't this mean that a hypothetical future 23andMe drowning in debit could be acquired by a company who could use the data for all sorts of terrible things without ever technically selling it to a third party?

This is what happened during the RadioShack bankruptcy iirc.

Instead of putting customer data up for sale they essentially just split off the portion of the company that held the data and put that up to be acquired.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#99

Earlier quoted context omitted.

Presumably most (98% isn't it) of our DNA is the same thought, right? About 98% of our DNA does just makes an ordinary human body with normal systems. So we're only interested in the 2% that can vary . Or whatever the actual numbers are.

It's not that only 2% _can_ vary, it's that each person has about 2% different from the reference genome (and that 2% is different for every single person).

And only a small subset of that 2% is able to cause pathology pathology.

So any diagnosic or risk predictive tests need only check those areas know to result in or increase the risk of pathology.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#100

Earlier quoted context omitted.

"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." And... "Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliv…

I obviously don't understand the specifics, but if they are later owned by someone else, is that new someone considered a third party? For instance, doesn't this mean that a hypothetical future 23andMe drowning in debit could be acquired by a company who could use the data for all sorts of terrible things without ever technically selling it to a third party?

Aren't they already selling your data to third parties? [0]

0. http://gizmodo.com/of-course-23andmes-business-plan-has-been...

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