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23andMe meets FDA standards, adds back wellness reports

blog.23andme.com

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Re: 23andMe meets FDA standards, adds back wellness reports

#61

Post by toomuchtodo »

op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

> It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you.

My genome is public on Harvard's Personal Genome's Project [+]; why would I care what 23andme does with my data?

[+] http://www.personalgenomes.org/

Re: 23andMe meets FDA standards, adds back wellness reports

#62

Post by awqrre »

delbel wrote: post #59
oneJob wrote: post #10

also, I don't trust them with my DNA data anymore.

Can you use a fake name?

You probably can but there is so much information in there that it might be trivial (or become trivial) to know that the name is fake based on some other information. But I guess it might be harder to tie it back to the real name.

Re: 23andMe meets FDA standards, adds back wellness reports

#63

Post by andrepd »

aeturnum wrote: post #46
op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

We're still in the infancy of diagnosing psychological state through word choice, yet uninformed people still talk to other people over chat. We're still in the infancy of detecting disease through microbiome analysis, yet some foolish people still meet in person without signed contracts not to collect that information. We're still in the infancy of analyzing video to detect mental state, yet people routinely go out…

There's a massive difference in the order ofd magnitude of information acquired by recording people's body language vs legally handing them over your genome. That sort of apples to oranges comparison does nothing for the argument.

Re: 23andMe meets FDA standards, adds back wellness reports

#64

Post by adenadel »

op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

There is no concept of "genome security" because you leave your genome everywhere you've ever been. If someone wants your genome and is willing to spend the money to sequence it, they've got it. Let's estimate 6pg of DNA per cell and that we need 100ng of DNA for sequencing. Rounded up that means 20000 cells left behind. That means you cannot leave a single hair, fingernail clipping, feces, etc anywhere that you do not trust to destroy them.

Re: 23andMe meets FDA standards, adds back wellness reports

#65

Post by devonEnlis »

chaud wrote: post #2

I would like to know how the new report compares to the old one. Also of note, the price has gone up from $99 (as of earlier this week) to $199. edit: This NYTimes article has more details: http://www.nytimes.com/2015/10/21/business/23andme-will-resu... Now, after nearly two years, 23andMe is announcing on Wednesday that it will begin providing customers with health information again, though much less than before and…

I'm preparing a blog post on the differences between the old and new 23andMe reports, and how they compare to a raw data analysis with Enlis Genome Personal.

Here are the headline numbers-

Number of health-related traits reported: Old: 201 New: 36 RawData: 2109

Number of health-related variants reported: Old: 1283 New: 100 RawData: 13,537

I will also note that while they increased the price, they are still using the same genotyping chip that they released in December 2013

Re: 23andMe meets FDA standards, adds back wellness reports

#66

Post by csl »

farresito wrote: post #48
csl wrote: post #40

Earlier quoted context omitted.

I've made a 23andMe parser that can report on this. Actually, it covers quite a lot of their health results: https://github.com/cslarsen/dna-traits The test for Alzheimers is here: https://github.com/cslarsen/dna-traits/blob/master/py-dnatra... (the algorithm used to be patented, by the way). By closely reading the algorithm, you can probably find out yourself, given that 23andMe still lets you browse your genome. To…

Woah. Quite interesting! Thank you. I've been increasingly interested in bioinformatics and your project seems quite nice. I will definitely give it a try.

Thanks. It's definitely a lot of fun. And, as you can see, some things are not hard at all to detect. In fact, I was surprised how little knowledge you need to be able to flick through genome wide association studies (GWAS) and casually play around with their findings. (It's also fun to see how desperately some GWAS studies seem to try to make sense of the genome --- it's a pretty young field, I guess!)

Of course, you should be pretty careful with interpreting results as a hobbyist (as I am). But probing your genome with a parser, like the one I've made, is a great vehicle for piquing your intellectual curiosity.

Re: 23andMe meets FDA standards, adds back wellness reports

#67

Post by breck »

op00to wrote: post #44
breck wrote: post #41

Earlier quoted context omitted.

If everyone had that attitude we'd still be using horses to get from point A to point B. :)

I don't follow your analogy. How does technological advancement in transportation relate to the privacy and security of our own genomes?

Early adopters accept risks that op calls "idiotic" because they believe in potential benefits of new tech. Without those early adopters we would not have new tech.

Re: 23andMe meets FDA standards, adds back wellness reports

#69

Post by mbreese »

cubano wrote: post #52
refurb wrote: post #28

Anyone else see this Forbes article?[1] It seems to indicate a high level of naivety on the part of 23&Me in terms of the regulatory requirements around genetic testing. What Hibbs found was that 23andMe and the FDA were not even speaking the same language. The FDA is guided by laws and regulations that limit what it can say, and 23andMe wasn’t picking up on the agency’s cues. FDA officials would leave 23andMe an ope…

Is it just me or does this sounds suspiciously like the Uber/Airbnb model? Seems to be working ok for them. Perhaps the nature of genetic testing changes things.

23andMe falls under Federal regulations - FDA. Uber and AirBnB operate in largely local/state regulated markets. It's harder to move fast and break things with a Federal regulator.

Re: 23andMe meets FDA standards, adds back wellness reports

#70

Post by mbreese »

Kneedler wrote: post #45
esaym wrote: post #25

Man, why is it so expensive? To test my wife and I would be nearly $400. I mean sure, it might help me be able to pre-treat any known trait based disease but still.. If all they are doing is running some DNA through a database, seems like the cost should getting lower, not higher.

I believe the $99 kits were sold as a loss leader to grow their database and establish themselves as a leader in the space. The actual cost to the company was/is much higher.

Selling kits isn't how they make their money. So, selling the tests at a loss shouldn't be surprising.
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