23andme.. still a good alternative concerning raw data? What about data privacy?

[Mike Petersen]

Hi everybody,

I´m very interesterd in personal genomics and analyzing my personal SNPs for traits and dispositions.
After doing some research it seems to me, that 23andme still offers some great analysis of many parts of your DNA. But my question is now, if it would be a good idea to leave your DNA to 23andme ( they are literally affiliated to the google company) or if there are any risks I should think about concerning the data privacy of my DNA.
Another question is, if there´s really an alternative to the service by 23andme.
Where else do I get so many information and especially raw data of my personal DNA?
Has anybody got some experiences? Would be great if you can help me with some advice.

Thank you so much and have a great day

Mike

[SC]

Hi Mike,

23andMe has ceased testing (or at least data distribution) of everything but ancestry information, pending negotiation with the FDA.  

Any other reliable company providing the same service would also be undertaking the same negotiation.  Beware any company that isn't, they probably just popped up and the FDA doesn't know about them yet.

But, I have faith 23and Me will reach an understanding with the FDA, which largely revolves around how "medical test" is defined.   When they come back, just use a fake name when you submit your sample.

You can also have your genome sequenced by other means, but you won't get a nicely packaged report, and it will be much more expensive.  I'd suggest you kep an eye on 23andme and just wait until they're able to offer the whole package.

[SC]

I'll also add that I had my DNA tested by 23andMe prior to the FDA restriction.  They returned hundreds of tests, traits, and bits of medical information.  It was shocking, really.   They successfully reported every trait that I could confirm or already knew, and provided references for the traits that I wasn't aware of.  

[Nathan McCorkle]

I wasn't too surprised with the data actually, nothing really
interesting or that made me say WOW. I tried this back then too (must
be 3 years ago now) http://www.snpedia.com/index.php/Promethease and I
remember it not working for me... I bet it has been fixed, but I can't
comment on whether I'd have been more surprised at it's info output.

If you're interested in the stuff, you might want to check out the
data here so you can get a feel for how to even start sifting through
it:
http://www.personalgenomes.org/harvard/data

[Mike Petersen]

Thank you for your comments.
Can anybody think of an alternative where to get my genetic raw data from to feed to Promethease?
Any other alternative than 23andme?

[Maria Chavez]

Actually I think that 23andMe cant give you the useful info (thanks to the FDA issues) but they do give you access to the raw SNP data.  Its not full gene sequencing but you can still get some useful info from it.
https://customercare.23andme.com/hc/en-us/articles/202907640-Using-Browse-Raw-Data

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[Cory Tobin]

> Can anybody think of an alternative where to get my genetic raw data from to
> feed to Promethease?

https://www.genebygene.com/pages/research#
GeneByGene offers a similar test to 23andme for $200. They won't
analyze it for you. They just give you the raw data. I don't think
it's the exact same chip that 23andme uses but it should be pretty
comparable. They also offer exome and whole genome sequencing if
you're interested.

-cory

[Koeng]

I was talking to one of the guys at retrogen that work with next-gen sequencing, and he said that they could probably get your entire genome in a single 900$ run. He also said that some other places would be better, but I believe those were academic centers. DIYing the full genome seems like the way to go!

[Forrest Flanagan]

Oh cool, I've been expecting full genome sequencing at <1000 USD to crop up. What kind of analysis tools are available for that? 

Would it be straightforward to modify the data to look like a supported file format for promethease?

[Koeng]

I think they just give raw files