NeuroTalk Support Groups - MJFF Recruit 10,000 for Web-based PD Research

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