A lot of us have been sent invitations to join "23andMe", the private genetic evaluation business at a reduced price (usually $399, special deal $25!) for a limited time. This is the brainchild of Sergey Brin, the co-founder of Google, and a well-respected figure around here ("here" being the SF Bay Area). He has arranged a partnership with 23andMe to start the biggest online research project on Parkinson's Disease EVER!
I must admit, I was confused when I got the letter about this, even though the letter was sent by two very respectable entities; the Parkinson's Institute and the Michael J. Fox Foundation. I couldn't figure out what they really wanted and why I was being asked to pay even the reduced rate of $25.oo to basically participate in a research study. Now I know; "23andMe" is a private company, and Sergey Brin has donated a LOT of his own money to underwrite the cost of their services. What happens is, they send you a genetic testing kit (a saliva test). You spit in the tube and follow whatever directions are on the kit, then send it back. In about 10 weeks you get you get a complete detailed report on your genetic makeup. This report will tell you if you have any of the genes known to cause Parkinson's (only a very small percentage of Parkies do) and also whether you have any of the genes known to cause other serious conditions, such as cancer or Huntington's Disease. The report will also include information about your ancestry, which should be interesting for most people.
This information is invaluable for researchers, especially when combined with the surveys that you have to agree to participating in when you sign up for the service. The data that are mined from this could lead to spectacular discoveries about Parkinson's. Or not; who knows? I think it's worth a shot, myself.
The thing we have to ask ourselves is this: do I WANT to know all this information about my genetics? For myself, I have a family history of breast cancer; my mother had it, and so did her mother. If I have one of the infamous breast cancer gene mutations, what will I do with that information? I'm too much of an optimist to just have my breasts removed to prevent cancer; if they told me I had a 95% chance of getting cancer, I would assume that I would be in the 5% that didn't get it. So, I would probably simply worry about it. That's just me. On the other hand, suppose I found out I DIDN'T have any of those nasty mutated genes? That would really ease my mind.
Anyway, after weighing the pros and cons, I did go ahead and sign up for it. I really think that this will help the researchers find good therapies and possibly a cure that much faster, so it will be worth it to me. I do think, though, that everyone considering signing up for it should think carefully about how the results of the test might affect their lives first.
I will certainly share anything interesting that comes of all this.