Not for everyone, I know, but


#1

https://www.michaeljfox.org/foundation/news-detail.php?23andme-signs-deal-with-genentech-for-study-of-parkinson-data

I believe 23 and me still offer free testing kits to PwP, the results make for good bedtime reading (personal view)

Be sure to read all of the warnings, including the BBC article before signing up, but if it helps research into new drugs, well, that works for me.


#2

Drewster

Have you tried 23andme? I haven't (yet) but a friend of mine has done it. He got a lot of thought provoking data from it. 

I think you are right that it's worth knowing what is involved before you spit in the tube. See also http://www.parkinsons.org.uk/news/2-december-2014/caution-around-new-dna-testing-kit

EF


#3

I had my DNA tested by 23andme about two years ago. It was free because I have been diagnosed with Parkinson's.

Although they have now launched the regular testing service in the UK (cost £125) the free testing for PWP is not currently available in the UK, until they get approval from the relevant Ethics committee.

You get access to an enormous amount of data which will suggest that you have a higher than average chance of developing "Disease X" and a lower than average chance of developing "Disease Y". You certainly should not act on this information without consulting your GP or other medical professional.

You also get a lot of data about your ancestry which may or may not interest you. For example they tell me that I am 2.8% Neanderthal.

Probably the most famous example of someone acting on genetic information (I think from 23andme) is Angelina Jolie who had a double mastectomy when she discovered that she had a specific genetic mutation with meant she had a more than 80% probability of developing breast cancer. But I'm sure she discussed this with medical people first!

And this is unusual, usually the tests say that your probability of getting "Cancer A" has increased from 1.25% to 1.8%. To which your first response  should  be "Don't Panic" and your second response should be "OK are there any lifestyle changes I can make to reduce the other factors which lead to this condition?"

But its one more piece of useful information. For example, my DNA results suggest I have a higher than average response to warfarin so, if my GP suggested I needed to take this drug, I would discuss the 23andme report about this with him and we would probably start with a more cautious dose.

If you want to know a bit more about 23andme I suggest you read this (7 part) article:

http://nymag.com/news/features/23andme-2014-4/

Cheers

AndrewJohn

 


#4

I did it (free), via the US site, and got all health and ancestry data (free).


#5

As did I.

But if you try and login to the Parkinson's section of 23andme US website today it will detect that you are in the UK (if you are in the UK) and redirect you to the UK site - which will say not available at present.

On the other hand if you do manage to login to the US website and sign up today you will not get any health data because the FDA have stopped them giving health data to new US applicants. They only give the ancestry data.

So, if you want the health data you have 3 choices:

1. Login to the UK site as a regular user and pay £125.

2. Wait until they get UK approval to collect Parkinson's data and apply for free (if you have PD, of course)

3. Wait until they resolve the dispute with the US FDA and login to the US site. (which I suspect could take even longer that 2.

Cheers

AndrewJohn


#6

I only did it in November, so have things changed since then?


#7

How interesting! Are you in the UK?

I just tried to log on to www.23andme.com and was diverted to their new UK site - which will sell you a test with full health and Ancestry data for £125.

I then tried www.23andme.com/pd and again it detected that I'm in the UK and gave the message:

"We're sorry.
This study is not currently available in your region.

Please contact us at pd-help@23andme.com if you have any questions."

So I can only assume that you sneeked in to the PD study just before they set up formal UK operations. But still got full health data as you are outside the US.

So, as at today for people in the UK I'm pretty sure of the information in my previous post.

Cheers

AndrewJohn


#8

I live UK, registered US site in Nov (19th Nov to be precise) and ordered the kit through the PwP freebie offer, at which point they knew I lived in UK.

They sent via international DHL, and paid for me to return it (prepaid env dropped to local DHL)

I can access ancestry and medical results, in fact, not sure there's anything I can't do/access)?