[Conductor71]

Finally, some researchers bold enough to step forward and say that we all have different pathophysiologies that manifest with similar symptoms - they are set to prove through genetic testing that there are dozens of different subtypes with distinct progression rates and symptom clusters.

For example, having curly toes means you may have the PINK 1 mutation.

Well, I think we need to come up with a pick up line "What's' your subtype?"

NIH and Population Diagnostics


Laura

[vlhperry]

Any one aware of this NINDS Grant study (known as CORE PD) besides myself? Laura and Carey, do you truly support the selling of confidential, information gathered by non-profit (National Institute of Neurological Diseases) sponsored research to private (National Diagnostics, Inc.), to sell to Pharma Companies to create for profit disease specific treatments to sell to specific disease patients?

Have you read the research sharing verbage on these free grants provided to companies like National Diagnostics, Inc. (for profit)? There are so many exceptions to the free sharing act and the sharing of information is not even considered as a primary requirement in the decision making of who (what private company) gets the grant.

When I became a participent in the above mentioned program, I was assured the genetic information I gave would not be sold to private companies. I am an idiot for buying into the government "Voltaire" philosophy of life. I have ratted out myself and every patient with Parkinson's Disease.

[Conductor71]

Originally Posted by vlhperry

Any one aware of this NINDS Grant study (known as CORE PD) besides myself? Laura and Carey, do you truly support the selling of confidential, information gathered by non-profit (National Institute of Neurological Diseases) sponsored research to private (National Diagnostics, Inc.), to sell to Pharma Companies to create for profit disease specific treatments to sell to specific disease patients?

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.

[vlhperry]

Originally Posted by Conductor71

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.

I will not waste time arguing politics with you. Thhis is not the correct venue anyway. **I will accept my status as the forum buffoon for my Naivity beleiving the government promice.

[reverett123]

Considering the type of info that we post on here, I am not going to worry. Privacy in today's world is an illusion, anyway.

However, it is good to see the "Taoist" (or is it Buddhist?) idea of "many paths to the one door" approach finally taking hold.

[Conductor71]

Originally Posted by reverett123

Considering the type of info that we post on here, I am not going to worry. Privacy in today's world is an illusion, anyway.

However, it is good to see the "Taoist" (or is it Buddhist?) idea of "many paths to the one door" approach finally taking hold.

I did not at all intend for that to be political...I think Rick says it all and much more succintly. I am just excited that we might actually see some new and improved treatments- besides I think that medicine is really going to be much more informed by genetics anyway especially when it comes to treatments, so I am thankful we're not being left behind to languish somewhere.

Here is my first interesting find between treatment with Levodopa and how our COMT allele may influence our metabolism of levodopa:

The association of functional catechol-O-methyltransferase haplotypes with risk of Parkinson's disease, levodopa treatment response, and complications.
Bialecka, M. et al. Pharmacogenetics Genomics (2008).

[indigogo]

This disease has already taken all of my money and will eventually completely imprison my body. My genetic code and health privacy are pretty meaningless and unimportant right now - in fact, I would err on the side of asking "what do you need to make progress?" In short of my brain or remaining health (not sure at what point I'd submit to an invasive clinical trial), I want to share.

[girija]

do you truly support the selling of confidential, information gathered by non-profit (National Institute of Neurological Diseases) sponsored research to private (National Diagnostics, Inc.), to sell to Pharma Companies to create for profit disease specific treatments to sell to specific disease patients?

Vicky,
You asked an important question and I may not have a direct answer, but some sort of explanation as I see it.

NIH gives out grants for start up biotech companies that have promising data/ideas that would result in a product as quickly as possible. yes, these are "free" but in fact they are "earned" with hard work and good ideas. These are called SBIR/STTR grants and give small companies to do what they want to accomplish without the pressures of investors or investing companies. I have benefited from these grants and It is the best thing NIH has done to take academic research to its ultimate use, i.e., to patients use.
I am assuming (almost sure) that the grant received by National Diagnostics falls in that category.

NIH also provides data collected via surveys etc., information gathered from patients to anyone (not-for profit or for profit). It is not sold, it is freely available. Individual Patient information is never revealed and it is always the group data and the total # of participants. In case, individual samples and the corresponding info is released, it goes by codes. This kind of service done by NIH,CDC and other centers/organizations funded by the Govt is and will be critical for finding understanding diseases.

I think these are examples of positive things done by Govt agencies to connect academic research to patient care. My strong belief is that out of the box ideas and cures based on novel thinking come from small/medium sized biotech companies and not from the big Pharma. They need financial support from NIH as well as patient support for finding cures for PD or anyother disorder.

Thanks
Girija

[vlhperry]

The problem I have with the release of the information is not the fact that it is my personal information, but information gathered from patients with the same gene mutation, gathered by their consent, then sold to a private company to earn income from and they can sell it to another private company to earn income from. I do not fear for my personel information, but then I am naive as I believed them, when I was told my genetic material would be assigned a number and would be untracable to me.

My requesting the information to be open and shared to any research company to be used was to prevent companies from buying a patent to certain genetic lines, preventing the information that was bought from being used for other illnesses. One mutation line may effect other genetic processes as well. Rather than speed the process up for all, it will start a series of lawsuits by companies, and prevent the growth of smaller pharma companies who will not have access to genetic mutations to continue their work.

The government NIH genitics grant program is like a drug cartel using their power to decide who the big players are and who are not.

I believe the reseacher who promised not to reveal genetic information was as naive as I was. Like me, he believed his superiors. There are still people who belive truth is truth, not a negotiating tool. I am proud to be a bumbler on a personal level and will not resort to the tactics of others to get my needs met. Viva la Bumblers!!

Thank you Girlija for your kind responce. Despite our disagreement on the long term effect of the method of dissemenating information, I thank you for your understanding and thoughtful responce.

[Conductor71]

Originally Posted by vlhperry

The problem I have with the release of the information is not the fact that it is my personal information, but information gathered from patients with the same gene mutation, gathered by their consent, then sold to a private company to earn income from and they can sell it to another private company to earn income from. I do not fear for my personel information, but then I am naive as I believed them, when I was told my genetic material would be assigned a number and would be untracable to me.

My requesting the information to be open and shared to any research company to be used was to prevent companies from buying a patent to certain genetic lines, preventing the information that was bought from being used for other illnesses. One mutation line may effect other genetic processes as well. Rather than speed the process up for all, it will start a series of lawsuits by companies, and prevent the growth of smaller pharma companies who will not have access to genetic mutations to continue their work.

The government NIH genitics grant program is like a drug cartel using their power to decide who the big players are and who are not.

Vicky,

I believe that genetics really will eventually be the driving force in developing novel drug therapies, so the ethical questions that you raise are very sobering and certainly we should all educate ourselves on. I recall feeling a little wary when reading the fine print on 23andme- they were very clear on the fact that the info they collected may not always stay anonymous.

This is a brave new world, and we really do need to be aware of where our information ultimatelly ends up. Based on what you are saying, you participated in genetic research with the understanding that it would be pooled together as sort of one large research base for many potential researchers or pharmas to build on? In reality, then you think that our genetic information will be sold and held by bigger pharma thus creating a monopoly? Is there any oversight on this through regulation or trade laws?

Thanks for bringing to light the business side of it all. I always find it difficult that my health is nothing more than a commodity.

Laura