23andMe vs the FDA


#1

Dear all,

Many of you know probably know that www.23andMe.com offers completely free of charge genetic analyses for PwP (they sell their services for all others).

I have used them and really liked their services.  It was both highly professional and gave me a practical insight that I'm using in my "fight" against PD.  It was also totally free of charge for PwP and extremelly simple & practical to use (you register on-line; they send you a test tube free of charge pack by international UPS; you put some of your saliva in the test tube and send back to them by prepaid/free of charge international UPS; a couple of weeks later you see your results on-line showing your genetic propensity of having certain diseases compared with the normal population; they also show you some cute info about your likely traits and ancestry).

In my case, I realised through their results that I seem to have a higher-than-average genetic propensity for a certain number of diseases that all seem to involve some sort of inflammation in the gastro-intestinal tract.  As I've also seen lots of research pointing to links between inflammation and PD, I have been focusing on that a lot and have now learned various ways to control inflammation and to control at least one mechanism between inflammation and PD.  I don't know if this will ultimately yield significant benefits for my PD, but hey, trying to at least control one possible cause is a lot better than just managing symptoms - which is all that neuros can do today.

Now, the US FDA (Federal Drugs Adminstration) is throwing needless bureaucracy at 23andMe and they will have to stop providing genetic-based reports on how likely you are to have certain diseases (at least until they spend millions to meet all the ridiculous administrative hurdles that the FDA will feel like throwing at them).  This is really a shame as it prevents people from having access to potentially invaluable information for free.

From my side, I signed a petition to the white house to ask them to tell the FDA to stop this nonsense (https://petitions.whitehouse.gov/petition/overrule-fdas-decision-bar-23andme-selling-their-potentially-life-saving-diagnostic-kits/96BRCYNB) and sent an e-mail to the FDA commissioner that is leading this action (Margaret.Hamburg@fda.hhs.gov) explaining how important 23andMe can be for PwP and asking her to stop what she's doing.  I'm not sure if her e-mail address above is correct or if it will ever get to her.

These people at 23andMe are doing a lot for PwP (for free) - I believe they deserve our support!

Warm regards to all,

lfs


#2

I have used the free 23andme test , i am not technically minded so do not fully understand the health report ,i am seeing a doctor with a special interest in genetics soon as both myself and my mother have pd , i know my report listed a few genes but i do not not understand them


#3

Hi Shelly,

I don't have a clue about genotypes either, but I find that getting some basic results is pretty doable for anyone.  In case it might be of help, here's a quick "how to":

Once you log in, click on "My Results" (on the top of the screen) then select "Health Risks".  This will display the list of all the diseases they know and how you score in each one of them.   The first ones they show you are the ones you have an "Elevated risk" (higher than average), then they show you the "Decreased risk" ones and finally the ones the "Typical risk".  For each disease (i.e., each line), they show you the following info:

1.  Disease name (e.g., Type 2 Diabetes).

2.  Confidence (e.g., 4 stars).  This is how sure they are about their results.  I only look at the ones with 4 starts (which are the more "sure" ones) and ignore the 3-star ones or less.

3.  Your risk (e.g., 31.1%).  This shows you the probability of you ever catching that disease, given the genes you have.  In other words, if 100 people had the same genes as you, 31.1 of them would get this disease during their life.  Note that this doesn't mean you'll ever have catch it.  Maybe you are part of those 31.1 people; maybe you are part of the remaining 58.9 people.  It's just a probability that reflects how often people with similar genes as you have cougth that disease.

4.  Avg Risk (eg, 25.7%) is the probability of catching this disease for the average person (I'm not sure if it's the average for all persons in this planet or just for those that are clients of 23andMe - anyway, it means the probability for the average person on the street).   

5.  Compared to average.  This is how your probability compares to the average.  If your risk for Type 2 Diabetes is 31.1% (like mine) and the average risk for Type 2 Diabetes is 25.7%, then your risk of catching Type 2 Diabetes is 1.21 (=31.1/25.7) times the average risk.  In other words, you are 1.21 times more sensitive to Type 2 Diabetes than an average person.  Any number bigger than 1 means that you are more susceptible to catch a disease;  any number smaller than one means you are less susceptible to catch it.  If the number is exactly 1, it means you're stop on the average.

What I find interesting about it, is not so much the probability of you getting a given disease (which in many cases is tiny anyway - and there's no point in worrying about some 0.25% probability of getting some sort of cancer anyway), but rather finding out the list of diseases that you are more vulnerable than the average person and asking yourself - are they somewhat related? In my case, they all seem to involve some sort of inflammation and focus around my GI track... which leads me to believe that I have some genetic weakness there.

Hope this helps,

lfs.

P.S.  Sometimes they don't show you the results for some diseases (e.g., "are you sure you really want to know this?" type of situations) and you have to click "yes" a number of times for them to show them to you.  I just clicked "yes" all those times and now my list shows everything.


#4

I'm newly diagnosed, and stumbled across 23andme while on a research blitz.

I've signed up and been accepted (so they still want us!!) for free.

I won't be able to get my results analysed from a health ris perspective, which is frustrating, but I do have a relative who works in genetics, so could risk passing to them for a private analysis (which may of course mean I have to "come out")

I've started taking VitD (u25) as I suspect most Brits are deficient due to our glorious weather, and homeopathic Argent Nitricum which has some success stories online. No prescription meds yet as my symptoms are mild and hardly impact as yet (lazy right hand side and some aches and pains)

Does anyone know of any service where you can send your full raw gene data for analysis? basically to do what the FDA has stopped 23andme from doing for us?


#5

So, UK residents or nationals can get health results again?


 http://www.bbc.co.uk/news/science-environment-30285581


#6

Hi all

We've posted a news story about 23andme today. 

Ezinda