Vicky,

No, I was not aware of this NINDS Grant study and the sharing of private information for use in developing treatments. I agree with you in theory that our health data should remain free of privatization, but in a society that so closely identifies with the tenets of a Free Market and Capitalism, I don't see realistically how we can have anything but this happen. Frankly, at this point, I couldn't care less about a company selling my data to a pharmaceutical company IF it results in better, more individualized treatments for others as well. Just look what happens...so many potential treatments in the Pipeline go fallow, if this kind of boutique development is what will relieve some suffering for PWP then so be it- where do I sign up?

Further, the current mode of genetic study leaves behind those of us who clearly have genetic components but are not sought ought for testing or research. My father clearly has an essential tremor and this is how PD began for me...I have asked doctors, searched Parkinson Centers to see where I might participate in research...to no avail. I have been told that unless I have a direct relative with PD, no one is interested. Well, there is a gene out there that now links ET to PD, but no one wants to research it. How am I to ever know what is going on? I have a young son, I would rather see the information further studied and potentially applied than to sit collecting dust on a library shelf or locked into an article database.

I wasn't necessarily condoning this practice of collecting and sharing information; I was merely happy that someone finally seemed interested in putting the pieces together. The CDC has never bothered to collect the most basic demographics on us, so I don't think we'll ever be free of profit motive in solving the PD puzzle (s).

Finally, to think that our health information isn't already being shared or otherwise revealed is naive. Our health is already directed and controlled by insurance companies and their profit margin controls all aspects of living with this disorder from diagnoses to treatments. Aetna, for example, will accept the UPSIT scractch 'n sniff smell test as an acceptable means of making a differential diagnosis for PD, yet they reject a PET scan as "experimental". Last I checked, they had just started noting and testing anosmia as a biomarker- how in the world can a scratch card not be considered experimental... Further, how does it make sense that an insurance co. would pay for met to visit 8 different neurologists all with a different clinical opinion on what I have when a PET scan pretty much shows dopamine depletion.

I recall that you stressed in a prior post many of us, especially young onset, were not willing to pay thousands of or our own money for better diagnostics in form of PET scan or for genetic testing to know all that we could about our disorder. I refuse to do that for two reasons: 1) I do not have the money 2) How will it help me or anyone else at this point? In reality, by paying for our own testing we are feeding right into the system that we'll accept the crappy status quo. Even if more of us did pay for own tests, we'll still have doctors who hide behind rather disingenuous (you're too young) claims to avoid a diagnosis that makes them uncomfortable; we will still have genetic research and sophisticated diagnostic tools unused or only applied to a select few; we will all still have very crude, inadequate treatment options and patient care . I would daresay that we need this profit mobilization to start seeing research translate into practice. If it takes branding and marketing a Young Onset Parkinsonian genotype, I welcome it- it's high time I saw a drug ad, Parkinson org website, or neurologist's office that didn't see me as Geriatric.

Laura

Oh, here is a really good, clear comprehensive overview and lit review on the genetics of Parkinson Disease in Nature Reviews.