[Stitcher]

03/12/2009

Michael J. Fox Foundation Joins Effort to Recruit 10,000 People with Parkinson's Disease to New Web-based PD Research Community


http://www.michaeljfox.org/newsEvent...cle.cfm?ID=303

Limited-time special offer will make 23andMe personal genetics service available to people with PD for $25 instead of standard $399

[jeanb]

I remember some posts a few months ago asking if pwp could participate in 23andme -- either at reduced rates, or for free. $25 rather than $399 is amazing!

Frankly I'm surprised not to see more pwp in this forum endorsing this.

I've signed up, and I hope others will too.

[paula_w]

The first time I read about 23 and me, the cost of this DNA testing was $1000. At the time, Katie Hood was encouraging us to look five years down the road and assuring us that the cost would come down.

Instead, the cost has come down in just five months to $399, still high for many pwp on fixed incomes. $25 gets my attention! In essence, thru 23 and me, and MJFF, google [Sergey Brin] is paying for DNA testing on a very large scale. This trial is delivered to the patient's home and is generating massive PR.

It doesn't get any more convenient than this. Carey is visiting before heading up to PAN and we both have of course signed up.

it's a...well duh? which is a long way of saying 'i agree with you jean.'
paula

[bluedahlia]

I wonder if this test will show predisposition to any other diseases, i.e breast cancer, etc.

It's a wonderful idea and should put a possible cure in the fast lane. KUDOS to all involved.

[paula_w]

hi bluedahlia,

i think I just read somewhere that it tests for 105 diseases. I'll post a source when I remember ...may have been NYtimes.

paula

[lindylanka]

I did it! For those based outside of the US it seems it is open to anyone with PD, there is a drop down menu of countries......

Lindy

[paula_w]

http://www.huffingtonpost.com/katie-..._b_174853.html

paula

[dbiker2]

I signed up!

[Debi Brooks]

Debi here...speaking as a person who doesn't have PD and speaking as an individual rather than on behalf of MJFF...but someone who has spit!

Since getting involved in the world of science (a far cry from my Wall Street days!) in 2000, I have become more and more fascinated by what we know and don't know about biology. There are 30,000 human diseases and we only know how to treat 10,000 of them. While we know more than we did even a few years ago, there is still more to learn. Among some of our more recent, important findings has been the role that genes play in determining disease as well as the role that genes might play in increasing risks for diseases...particularly in combination with environmental factors (everything from exposures to behaviors).

There have long been brilliant people pondering these questions of behalf human kind but there is no doubt that over the centuries we have developed new tools that can take our ability to ponder to new levels...for example, improvements (speed and cost) in computational power have been impacting science for decades and notably contributed to cracking our genetic code.

I for one am excited to imagine how much more we can learn in the coming years and I am a firm believer that communities that figure out how to gather and analyze data better will benefit far faster than those who can't.

Anyway, all this to say why, I personally have been willing to spit--I wanted to get access to my person genetic information. Last year I signed my whole family up for the commercial genetic service provided by 23andMe (at the market rate--not at the PD community rate)...we all spit (yes, even my twin four-year-olds!) and I have enjoyed exploring the data that the service provides. For me, personally, I went into the service assuming I wouldn't learn anything scary about my genetic risk factors for disease (I'm an optimist! and I come from a long line of long-lived family members--nothing staring me in the face) but I could have been wrong. My children are adopted so I was very interested in filing in the blanks that existed in our knowledge about their genetic risk factors for diseases (since we have no family history from their parents)...in the process, we found out that they are identical twins--something we didn't yet know. That was pretty neat. My husband was more neutral about getting his done. I've also had a few friends who have decided to do it.

What did we learn? We each learned information about our ancestry (that part is really cool) and we learned something about how our individual genetic information lines up against what is known today about genetic risk factors from studying humans so far. For instance, my genetic data suggested I was at elevated risk for a certain chronic autoimmune disease (well, in fact, I have been diagnosed with the disorder for over twenty-five years). I also learned about other diseases where I had slightly elevated risks and some where I had normal risks and still others where I had slightly lower risks. But it is important to know going in--this service doesn't tell you everything about everything--doesn't claim to.

The SNP analysis looks at neighborhoods of genes and draws inferences and then compares what we know about those neighborhoods from published studies. Over time, more will be known about genetic risk factors for disease and overtime, the neighborhood analysis will be more illuminating. And, again, the genotyping doesn't analyze environmental risk factors (although it is a goal of 23andme to figure out how to overlay gathered environmental data--that's what the surveys hope to do). But I like how 23andme attempts to explain, in lay language, what science knows so far about the diseases it reports on and how both genetics and environment might contribute to your probability of developing a disease in your lifetime...(you can read all about this stuff on their site).

I want to also share that I have friends who aren't as interested as I am in knowing this kind of information or question the value of knowing this kind of information. So, really, people land in different spots on this and need to make personal decisions about getting involved.

Anyway, thought I'd share my personal experience since I've done the 23andMe tests myself.

Debi

[paula_w]

Hi Debi,

So now you know that your children are the spitting image of each other! All that because you spat....


paula