Parkinson's Disease Tulip


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Old 05-16-2008, 06:32 PM #11
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Here's more about 23 and me. This is a pilot program and does involve some privacy risks. IT also involves people "giving" medical information for clinical trials to those who pay a one time fee. One of the founders is married to a founder of google. MJFF never does anything halfway...lol

So we are going to have to invest some trust into this project. We know we can trust FOX to have the right intentions. The ceregene trial phase II [I don't know about phase I] filled up pretty quickly for a gene therapy trial. This one is much easier, but you are giving up your medical records.

Trust is everything.

Howard no medical records? do you have socialized medicine? All the more reason to get them on a computer!


http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=346


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Last edited by paula_w; 05-17-2008 at 12:53 AM. Reason: first article must already have been archived - deleted URL
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Old 05-16-2008, 11:01 PM #12
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Thumbs down paula this is what I posted originally -this is what may be against the law?

http://neurotalk.psychcentral.com/thread45713.html
my original post :
the is against my rights - they will code you - profile the genetic code
and see that you have a bad gene that carries PD, and you will be deemed
poorly by insurance companies etc... none of their business...
MJF is way off on this too - look what happened with stem cells -
the adult styem cells from our own bodies would have helped embryonic
I would caution against - cord blood is not as great as you may think -

gdnf - problem was getting the the proteins smaller than the cells so that the BBB would be able to be readily used,
please watch GATTACA - the man that helped direct it is one of the top geneticist...

our food is being screwed with -genetic engineering by men - who are puting all types of insanity together -like monsanto

digg deep on this one -you are a de-generate -and this will effect your grandson more than it will you dear Paula
who can straighten what God has made crooked?



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Home > Biotech Patents, Biotech Patents > Chinese Patent System: Problems and Best Practices >
05 | 14 | 2008 Posted By Kristie Prinz
Chinese Patent System: Problems and Best Practices
The Chinese patent system has come under increasing scutiny in the biotech and pharmaceutical industries as China has taken on a more important role in the world market. In this week's IP Frontline, Thomas Babel examines the Chinese patent system and answers the question: does the system really protect inventions? He also offers some best practices for protecting inventions in China.

Babel describes a key problem with the Chinese system as follows:

China, unlike the United States, is a first-to-file system. This means that if two inventors file a patent application for the same innovation, the first to file the application with SIPO will be granted the patent even if the other inventor was the first to invent. In addition, unlike the United States where an inventor has one year from the date of the first public disclosure of the innovation to file for patent protection, public disclosure prior to filing in China is an absolute bar to the grant of a patent on the disclosed innovation, except in very limited circumstances. . . .

The combination of a first-to-file system with a system where a patent may be granted with little or no investigation results in the obvious: patents granted to non-inventors. It is a relatively easy matter, at least as to utility model and design patents, for an interloper to file for and be granted a patent on an innovation created by another person or which has been afforded protection in another jurisdiction, such as the United States. For instance, if a foreign entity has a United States patent but fails to file or register that patent in China, a Chinese company can easily take the innovation and get a utility model patent in China in its own name. The Chinese company then can use its utility model patent to prevent others, including the foreign entity, from producing products in China that incorporate that innovation.


According to Babel, another problem is the full investigations are often not conducted on patent filings.

Babel explains as follows:

Since, realistically, a full investigation has not been made by SIPO, the presumption flowing from the Chinese process presents an unfair advantage to those who improperly obtain patents. Since the burden of proof is on the person challenging a patent to show that the innovation in question is that person's property, the various evidentiary and procedural hurdles found in the Chinese court system can make it very difficult, and perhaps impossible, to overcome the presumption and prove that an innovation was stolen by a Chinese company.


So what are some best practices to follow when trying to protect inventions in China?

Babel recommends the following:

[C]ontractually prohibit any Chinese company with which the United States inventor is dealing from filing a patent application related to any innovation found in the product it is producing for its United States customer, and/or to obligate such Chinese company to recognize that any innovation found, discovered, and/or created during the parties’ relationship is the property of the United States customer. This language can help if the Chinese company tries to seek protection of an innovation owned by a United States company. Chinese courts do have a relatively good record of enforcing contracts.

Another alternative is to require arbitration of patent disputes. The Chinese court system recognizes and will enforce arbitration decisions. Arbitration allows parties to adjudicate their disputes without having to adhere to the archaic and problematic evidentiary rules of the Chinese court system. There are a number of organizations located in Beijing and Hong Kong which can render arbitration awards that will be enforced by Chinese courts. Two of the more recognized organizations are the China International Economic and Trade Arbitration Commission in Beijing and the Hong Kong International Arbitration Centre. Many of the arbitrators employed by these organizations are Western trained, which helps to further avoid many of the archaic evidentiary and procedural rules found in the Chinese court system. Therefore, it is advisable to insert an arbitration provision in any contract with a Chinese company.


While I have not handled many transactions in China to date (although several of my clients are in the process of moving into the Chinese market, so this is likely to change in the near future), Babel's advice is in line with what I typically advise clients who are doing business in Asia. It is important to contractually protect intellectual property in any business relationship, and in doing business overseas, it is always a good idea to provide for the resolution of disputes by binding arbitration to the extent possible. I typically try to steer clients toward arbitration in countries where the system of law is based on the English system, since the U.S. legal system is similarly based on the English system of law, but in the alternative, I like the idea of using Western-trained arbitrators.

http://www.californiabiotechlaw.com/
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Old 05-17-2008, 12:20 AM #13
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parallel lives - information moving right along - this is my google alert for Parkinson's DIsease Research tonight

http://www.bioworld.com/servlet/com....&forceid=47630

paula

Sorry tena i got distracted in hyperlink land. i asked what do you think and wanted honest answers. I'm glad you gave yours. i am just communicating information, not promoting everything that comes up. On the other hand, [that's what i want on my tombstone, along with , 'i told you but you wouldn't listen' ...lol], I see a match between what many are asking for and what this group consistently takes on.
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Old 05-17-2008, 07:10 AM #14
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Ok on second thought about the whole thing, I do not trust the big pharmaceutical companies. Their dishonesty, hugely escalating profit margins despite grants from the government and foundations, and many of their methods are totally suspect to me. They are known to already keep records of doctors and patients, and know when a patient is switched from one medication to another, and use this information to try and pressure and manipulate doctors further.

Therefore I would not want my medical and genetic particulars to be available to anybody that I did not expressly approve having that information. I say give us an accurate diagnostic tool for Parkinson's first - something better than well, if you respond to our drugs then you must have our disease.

Last edited by Fiona; 05-17-2008 at 07:14 AM. Reason: needed to clarify
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Old 05-17-2008, 07:42 AM #15
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records....yes...but very basic and lacking detail. New Zealand has one of the best training programs around. Our Drs and nurses are sort after world wide such is the shortage of skilled medical people. How do the medical fraternity expect to develop and cure disease if they are not gathering detailed information from patients. New Zealand's health system is both private and socialist. Like all socialist systems our public hospitals are full of too many beaurocrats and too.. few front line medical people. But thats a whole new book.

NZ does fairly well in health with the usual socialist problems of over worked and underpaid junior doctors while senior Doctors are earning huge incomes. Somewhere there needs to be a balance. Medical records remain private between patient and the medical fraternity or bio tech company contracted too. I would like to think that science and mankind is heading towards curing disease and the need for a comprehnsive business plan as outlined in your opening thread is welcome news, and not before time. I don't share the view that those of us with disease or pending disease, will be set up as a degenerate class. The only justifiable criteria for such a brilliant business plan is the curing of disease. And the MJF, P.A. and 23 and me group is an exciting concept.

Tena, as long as we have you watching our backs the road too curing disease looks assured. Any form of quisling business concern embracing despotism in all its guises is pure evil and the great American tradition of fighting against tyranny and those that would want to use personal medical information against that individual does not cut it, and will not survive in a competitive free market enviroment.....The China question is complex and their pirating and plagerising of known succesful brands is well known.
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Old 05-17-2008, 10:41 AM #16
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Hey now i've had some time to get some reactions and think about it...I'll just spell it out as it happened.

At first I was a little repelled by the idea, even though this is exactly what the new model [isn't that what is being developed?] of drug development is calling for - electronic records, comparative evidence, data sharing, - so this meets all of the criteria and they'll put the money to work quickly. AND TEST YOUR GENES.

This is good. The govt. would take years to get this going, but adjacent legislation is in the works along with these projects.....another good thing. But .....wife to google? Google already knows who I am and where I live, do I want anyone that close to google to have my records? The trust isn't there yet so more communication to patients is a must.

On the other hand, it meets all the criteria that we are thinking is needed. And the Parkinson's Institute is very reputable. So is MJFF. They [23 and me] are being upfront about their shaky start. I think I'm in so far [not the study - it's just for institute patients unless you pay I think]- just in to the idea and will hope for updates.

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Old 05-17-2008, 06:42 PM #17
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But Paula, I still feel a little in the dark here. I don't understand what it would do for me to have my genes tested....so they can say, yup, you got it. Or then knowing that, I'll decide not to procreate? Or my sisters and their kids can freak out for the rest of their lives thinking they're going to come down with it? And if they do somehow, so that they can take Sinemet earlier? So that I can say well it wasn't a behavior of mine that caused this and therefore feel less guilty? I guess I'm missing the benefit to me here...
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Old 05-17-2008, 09:19 PM #18
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I am a little more than miffed that MJF foundation info is not in the public domain. and will write to tell them....madelyn
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Old 05-17-2008, 11:59 PM #19
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Post 1000 buck?

23andme so named -according to genetic stats
you get 23 chromosones from yourr mom and the rest from your father?
they are checking blodlines here,
this is the longest way possible to find a cure?
but it will cost each parkie a $1000 bucks...big money yet -a long time results?
worthless...



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Old 05-18-2008, 09:25 AM #20
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Second time - lost the first. Rats!

Fiona, I think genetic scanning is here to stay for all illnesses, and legislation must ensure protection. I would be more concerned if I were younger and still in the workforce. It's purpose tho is to find biomarkers for PD and define subtypes. From there the hope is that they can determine why some people respond to treatments and some don't, and find the correct treatment for the subtypes. So far, and someone please correct me if wrong, having a certain gene associated with PD does not guarantee that one will get the disease. But with young onset, especially, a gene mutation seems to play a major role when combined with another event, e.g. toxins.

Tena, the MJFF is paying for the Parkinson's Institute patient participants genetic scans. Others are invited to participate, or will be invited later - not sure which, by purchasing their own scans and entering their data into the study. The more data the better. No one is being forced to pay.

What bothered me at first, even tho i'm a believer in online data sharing for these purposes, is the fact that wealthy peeple may get a lot wealthier in the process. i thnk participants should be paid for sharing their data, and for participating in trials. I don't subscribe to the 'payment is coercion' way of thinking [surely created by someone who would benefit from it] and believe that if our medical records are valuable for saving mankind, that we should not have to go through the hardship and stress of dealing with people who clearly think they are smarter than us, and are not necessarily honest.

Yes, a new paradigm is being created and we need it desperately. But i still see the patients treated as a means to an end for the rich. oh for the good old days, where making things about money was considered tacky.

I can get over this, but trust is everything.

paula
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