23andme begin IBD research - US based only for now

Wanted to bump this thread.

23andMe is doing an IBD study with Pfizer. The purpose is *likely* to see if genetic markers can be used to prescribe specialized treatment plans (rather than the try every drug until something works approach).

You will be asked to fill out a short survey about your condition, and then they'll send you a spit-kit free of charge (normally $99)!

If you're in the US and interested in furthering IBD research, please do give this a shot. As analytics techniques get more sophisticated, the more data there is about diseases, the better our chances are.

I just got my spit-kit last weekend and I'm about to mail out my sample now!


Thanks!

Got my results back a couple days ago and used Prometheus to translate the raw data. Glad I did it, there were no surprises in the results. The top health risks were all for what I already have, even had my eye color correct. Between the ancestry and DNA information I have plenty of data to keep me busy.

notsosicklygirl said...
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.

Pfizer makes money by selling drugs, and they can thus make more money by selling drugs to people who have health insurance. It would be bad for Pfizer for them to give your information to health insurance companies.

But doesn't Obamacare prevent insurance companies from denying anyone coverage now?

23andme does not give health reports any more but does give you (and only you) your genetic codes (uninterpreted raw data) which you can upload to unaffiliated companies online who will analyze and tell you what you are at risk for based on your genetic profile. One of those companies is in the quote you used.

This is very new science so don't take results as gospel.

Blandnuts said...
Where is the raw data? I listen to my DNA melody and it didn't help my search.

Go to the 23andme website. Click on your name on the top right and click on "browse raw data". Then click on "download" on the upper right corner.

Can't do this because I don't live in the US, but I really don't think I want to know what my future risk for getting Alzheimer's is: probably go into a year-long depression.

I would be interested in knowing what my IBD-related genes were though.

The major reason for submitting the kit is because 23andMe can use the information in the survey and your DNA to identify risk factors for UC. These could be gene mutations which might just have an easy fix. Could lead to better drugs and/or more productive research. The raw data that they give you can be used to get a free or low cost health report from other companies but you don't have to. You don't have to look at the ancestry information either.

I had 3 major negative health issues and can do something about all 3. Found out I don't have a high risk factor for the disease that killed off most of my dad's side of the family. I don't have an overall increased risk for IBD (maybe the opposite) but I do have homozygous mutation of a gene(MTHFR) that can cause underproduction of neurotransmitters and catecholamines(including serotonin, melatonin, dopamine, norepinephrine, and epinephrine) which is implicated in IBD, IBS, depression, pain, insomnia...AND another mutation that makes acquiring B vitamins from food and most supplements difficult. A double whammy because low folate and B12 are bad for neurotransmitter production. The B deal can be fixed with methyl versions of B12 and folate. Drugs already exist to replace and stimulate production of neurotransmitters. Might not fix my UC. Might not have caused it but low B12 and folate are known to cause alzheimer and parkinson like symptoms in older people and a bunch of other undesirable stuff.

Not sure I would want to pay $99 for it but hey it was free.

Tunnelvisionary said...
If I were to do something like this, would I be able to find what UC risk factor genes I have?

On Promethease On Demand they give you a medical bad/good with risk factors for UC and IBD for the gene mutations that they are currently aware of. Genetic genie also identifies gene mutations that could be problematic.

A good reason for doing the test is that it might turn up more risk factors. They are shooting for 10,000 sample size and nobody has done a group that large before. It costs ZERO and takes 5 minutes to sign up and do the one required survey. You don't have to go farther than your mail box.

Another issue is that many gene mutations have been identified that cause digestive problems and absorption issues. Might not matter if you have a healthy colon but could be a concern for a UC suffer.

They do look at risk factors and medication. I found out that certain statin drugs are almost certainly going to cause me side effects. Possible they could learn things about UC meds?

AZYooper said...

Tunnelvisionary said...
If I were to do something like this, would I be able to find what UC risk factor genes I have?

On Promethease On Demand they give you a medical bad/good with risk factors for UC and IBD for the gene mutations that they are currently aware of. Genetic genie also identifies gene mutations that could be problematic.

A good reason for doing the test is that it might turn up more risk factors. They are shooting for 10,000 sample size and nobody has done a group that large before. It costs ZERO and takes 5 minutes to sign up and do the one required survey. You don't have to go farther than your mail box.

Another issue is that many gene mutations have been identified that cause digestive problems and absorption issues. Might not matter if you have a healthy colon but could be a concern for a UC suffer.

They do look at risk factors and medication. I found out that certain statin drugs are almost certainly going to cause me side effects. Possible they could learn things about UC meds?

Seems like a pretty good idea to find out. I just might do the Promethease On Demand thing.

You can still sign up. Absolutely free.

/www.23andme.com/ibd/

You register.
A short online questionnaire is required.
The box comes in the mail postage free.
You spit in a tube and seal it back in the box.
Postage included, just drop it in the mail box.

Really no excuse not to do it. What they find out could be very helpful to UC people.

I just completed the process of signing up. Dunno when my spit kit will arrive, but I am glad to have an opportunity to help further IBD research.

Trying to get my son to also do this.
Might be interesting to compare both of our genetic data.
But then again might not really mean that much,since identical twins not necessarily concordant for IBD,
think I remember 10%,which lays much of it on the environment.
Old Mike