Author Topic: 23 and Me and Parkinson's Research  (Read 4450 times)

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Online The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #45 on: September 07, 2017, 03:18:44 PM »
Thanks for keeping us updated.
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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #46 on: September 07, 2017, 03:48:59 PM »


Looks like they're still searching for participants.  I'm in the "genetic cohort" group; the "genetic registry" group is people with the same condition but they get a simplified version of the exams, mostly phone calls.

Turned in my expense report today - $39 - breakfast, lunch, and public transportation.  Some of the cohorts come from out of state and get airfare, hotels, and rental cars, so I'm pretty cheap data.

The researchers do update conference calls that they invite participants to listen in on, and they also make professional presentation materials available to look at; it's a nice way to thank us for being involved.







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Online The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #47 on: September 07, 2017, 04:54:18 PM »
I’ve often thought of doing 23andme.  I was on the point of doing it before their spat with the FDA.  It looks like they’re now able to give some health-related genetic results. Has anyone down 23andme since the changes?

I am perhaps unreasonably concerned about the future uses of such data once its available, though.
I would like to propose...that...it is undesirable to believe in a proposition when there is no ground whatever for supposing it true. — Bertrand Russell

Offline HighPockets

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Re: 23 and Me and Parkinson's Research
« Reply #48 on: September 07, 2017, 05:46:30 PM »
I gave Zaros a kit for x-mas this year (last year...whatever) and got one for me for half price. the health info is really really basic, IIRC FA got approached individually  because of a genetic marker they found. but i don't know if that would have been in an initial report that me as an end user would have figured out. To be honest I looked at the original reports, said yeah, 98% European, good chance i'm not lactose intolerant, and then kind of stopped looking though the data.

The privacy concerns did cross my mind as well. but after actually seeing the checks and balances in place i'm pretty comfortable with it.
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Online Friendly Angel

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Re: 23 and Me and Parkinson's Research
« Reply #49 on: September 07, 2017, 06:13:16 PM »
I’ve often thought of doing 23andme.  I was on the point of doing it before their spat with the FDA.  It looks like they’re now able to give some health-related genetic results. Has anyone down 23andme since the changes?

Check out this page for a description of what's included in the health reports - it includes genetic health risks and carrier status, but far fewer specific disease risks than I got from my pre-FDA spat report:

https://www.23andme.com/dna-health-ancestry/

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Online The Latinist

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Re: 23 and Me and Parkinson's Research
« Reply #50 on: September 07, 2017, 11:06:31 PM »
I understand that one can still get that information by combining the raw data with lists of known genes using open-source software, but it requires a lot more work.

The other thing that makes me hesitate is the expectation that whole-genome sequencing will become much more readily available over the next 5-10 years.
I would like to propose...that...it is undesirable to believe in a proposition when there is no ground whatever for supposing it true. — Bertrand Russell

 

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