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23andme begin IBD research - US based only for now

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Posted 8/13/2014 10:06 AM (GMT 0)
Apologies if posted already

I did a 23andme screen sometime ago so receive their newsletter. They have begun a big IBD research project with Pfizer.

If interested you can read about it here. I cannot take part as am not in US otherwise I would.

/www.23andme.com/ibd/?utm_source=23andme&utm_medium=email&utm_content=23c_Email_Platform&utm_campaign=newsletter1&cvosrc=email.newsletter1
Posted 8/13/2014 12:27 PM (GMT 0)
Thanks for the link. I'm registered with 23andme but never got this invitation. I went to the link and participated in the survey. Seems they want to know what meds work compared to your genetic type. I had to answer that none of the long list worked for me (no questions about diet). The test is anonymous.

Seems like a good deal for people who want to know about their genes because they would get their profile for free instead of paying $99 as I did. It's the basic saliva test sent through the mail.
Posted 8/13/2014 12:28 PM (GMT 0)
Interesting. Thanks for posting!
Posted 8/13/2014 4:11 PM (GMT 0)
I signed up to get the free test kit. Doesn't look like any negatives to participating BUT I am pretty sure it isn't going to be used for medical research but for marketing or directing product development for Pfizer. A real medical research project would verify medical records and require test results. No big deal you are basically getting a free test for filling out a very short survey and you name is being given to no one. $99 for 15 minutes and some spit is worth it. I am interested to see what other people are paying $99 for.
Posted 8/13/2014 8:51 PM (GMT 0)
When I paid my $99 I got a health risk report which they had to stop giving out because the FDA got involved. Generally told me what proclivities my genotype had for certain diseases. I find it interesting but not life-altering to know I have 3x the average risk for Type 1 diabetes and almost 2x Alzheimer's risk. Diabetes was a surprise but I knew about AZ due to 2 sides of family having it.

They say I have 3x risk of Celiac but the med. test at doctors office (not biopsy which is gold standard) said I'm not although I am gluten-intolerant (my own food testing). Never had an anaphylactic episode.

New 23andme'ers will not get the health report but will get a list of their genes which they then have to figure out how to interpret.
Posted 8/13/2014 11:18 PM (GMT 0)
I am trying to do it but it's asking me to fill out a lot of forms.
Posted 8/14/2014 1:09 AM (GMT 0)
This is pretty odd.
They are using new/different array for this purpose, yet those who have been genotyped earlier have been excluded..
Posted 8/14/2014 5:10 AM (GMT 0)
This looks really cool; for once I wish I was an American so I could participate. I wonder how they do their tests though. Do they only look at a few target loci or do they sequence the entire genome, because that can get very expensive very quickly
Posted 8/14/2014 5:48 AM (GMT 0)
Took reading, clicking and answering a few questions. Will see what happens.

Post Edited (I got uc) : 9/6/2014 12:36:43 AM (GMT-6)

Posted 8/14/2014 5:41 PM (GMT 0)
Good stuff! What are they trying to determine exactly as to how medicines work for specific people? Based on specific genes?
Posted 8/15/2014 4:52 PM (GMT 0)

hateuc said...
Interesting. Thanks for posting!

Yes thanks
Posted 8/15/2014 8:15 PM (GMT 0)
Here is a link to Promethease On Demand which for $5 will download your raw data from 23andme and analyze for medical purposes. Similar top what 23andme used to do. You can google for explanation and a way of getting it for free that takes longer.

I lost the link but there is a website that has a bunch of free services that will give you medical, ancestry, physical traits etc info from your raw data.

/promethease.com/ondemandlicense

Post Edited (AZYooper) : 8/15/2014 4:19:01 PM (GMT-6)

Posted 8/17/2014 4:11 PM (GMT 0)
Here is the other link.

http://23pp.david-web.co.uk/getting-more-from-your-data/

I already got the test kit in the mail. Fast service
Posted 8/17/2014 5:22 PM (GMT 0)
Thanks for the post.
Posted 8/18/2014 6:37 PM (GMT 0)
I got my kit too but now I am not sure I want to do it. :(

Did anyone else sign up
Posted 8/18/2014 7:12 PM (GMT 0)
Was thinking about it but it kind of sounds like too much trouble.
Posted 8/18/2014 8:09 PM (GMT 0)
I may take part in this myself but will think about it for a week or so first.
Posted 8/18/2014 11:23 PM (GMT 0)
I signed up for this study. I've already taken the IBD survey along with some others, and my kit came in the mail today.

Curious as to why some of you are having 2nd thoughts about participating or think that it sounds like too much trouble?
Posted 8/18/2014 11:41 PM (GMT 0)
Maybe afraid someone might post the results on facebook? I'm soooo gonna LIKE it!
Posted 8/19/2014 12:05 AM (GMT 0)
Some people should probably not find out if they have the potential for serious (more serious than UC) diseases. My husband is one of those people, he could become depressed or distressed and it could affect his outlook about everything, so he won't be doing it.

I was curious about my genes and am not affected by what my report said. Being a control freak I believe my genes don't rule me completely. I'll die someday but until then I'm in charge of how to live my life.
Posted 8/19/2014 12:13 AM (GMT 0)
I guess I'm lazy. Don't want to go through the work of signing up. Don't want to go through the work of getting raw data translated into usable info and it looks like you have to do get raw data translated by more than one place to find out more things. I would find ancestry data interesting but that's another whole process. Might change my mind at some point but not right now.
Posted 8/19/2014 3:52 AM (GMT 0)
I already did the leg work. I think what i am scared of is them sharing my information with insurance companies and me being unable to get insured in the future. I thought about his for a while and that's what scares me. That or being discriminated against by companies where i want to get hired. I don't know who they are sharing the information with. I love the idea of helping to find similarities in DNA.
Posted 8/26/2014 3:49 PM (GMT 0)
I just went to the site through the link they sent me a while ago and I see that they are no longer providing health results: /www.23andme.com/health/

I guess this means even if we do the test, we will only get ancestry results? I haven't submitted mine but if I login and click on my results, it shows a sample result and it shows a lot of conditions and the likelihood of getting them based on your DNA and the test (not sure how accurate it is...). Will we get this or just the ancestry stuff? I don't care at all about that.
Posted 8/26/2014 6:47 PM (GMT 0)
I hope not, I was sending mine out today.
Posted 8/26/2014 8:25 PM (GMT 0)
Sent in my 23 and me sample back in April, and received the ancestry results only afterwards on their website. They do have a great website with lots of explanations but it would be better from my point of view if they could still offer the health information, ie. risks of various diseases.

I just today did the IBD survey. They ask what IBD you suffer from and which of your relatives have been diagnosed. They ask about your date of first symptoms, first diagnosis, flares in last year, drugs taken, whether those drugs you have taken helped or not, whether you have had surgery, related conditions (skin and bone). One of the questions on status in the last year should be edited because it doesn't work - there is no answer for mild symptoms while taking medication. Anyway, I hope the data helps someone.
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