[paula_w]

lizzie's reply to my questions about analyzing for just one gene with links to more information.

Hi Paula,

In terms of the health topics covered in the 23andMe service, this is a growing list that is currently at 109 diseases and other health topics and they are summarized here: https://www.23andme.com/health/all/. I encourage you to take a few minutes to look over the list and read about the distinction between a clinical and a research report. I will note that we're currently a one-stop shop at 23andMe. When you sign up for our service you get everything, including ancestry information. Some people do not realize this. However, everyone can look at as much or as little of the information as they are interested in. If you don't want to look, it's pretty easy not to.

In terms of PD-specific markers, we currently check for the two most common (though still rare) known markers that are associated with PD. A summary of the state of the union on genetics and PD, which goes into a lot more detail on the genes -- particularly those included in the 23andMe service is here: http://spittoon.23andme.com/2009/03/...k-in-progress/

Let me know if you have any questions about this!

Lizzie

[paula_w]

i have a need to know, from your perspective, could you honestly - no right or wrong answers, truly just from wherever you are , tell why you can't bring yourself to do this...and when we are finished, i'll try to describe what it feels like to sound like such a dreamer, always talkin.i can easily put myself in your place physically and mentally and not take part.

there are political reasons that need to just be placed aside for awhile. it isn't helping anything and doesn't represent us all. we know quite a bit about each other, so i just am not concerned about where this info could end up. and this is something we could all agree upon, if we tried hard enough - that would include the orgs.

you know that i know just as well as any of yu, all the reasons that this hasn't grabbed you in some way. but i would love for you to just honestly tell us...it would be daring and at this point, I'm really curious and kind of fascinated No condemnation.....no self righteous scolding. it could get funny and everybody can relate to it.

i don't participate in anything that i do not feel a deep champion drive for because of , as yu all know well, no energy. have to use it all on your own thing. And I have a need to be educated more about this 23 and me. This kind of offer isn't going to be dropped in our lap again...i think this kind of large scale effort is like a comet that you see maybe twice if that in a lifetime.

I confess that i haven't finished any books written by anyone in the community except evan henry, the author of shaken, and monkeys in the middle. i just can't focus that long. it's nothing personal.

ok so you haven't spit yet. what would you say is the reason why....not that there still isn't time...there is.

what don't you like about the idea? or what part?

thank you all,
paula

[vlhperry]

The link you displayed does not discuss the effects of deletion of exon 5 in the Parkin gene. How is this incomplete discussion of the mutations going to help the patient? It also does not discuss the possibility of two mutations, if they come from one parent or both. The possibility of the information getting into the hands of insurance companies who may decide to not insure children of patients who participate in these studies could mean that parents who are hoping to help their children may actually be making their lives more difficult.

A Research program will promise not to reveal their information. How is the patient safegaurded here? If the study is not approved by the FDA, 123 and me are free to use the information as they wish. The patient gets to see their results, however since they have sold their genetic information to 123and Me, Inc. what prevents Google from releasing the purchased information to anyone they want to? The program has the potential to help discover helpful information for patients. But like most industry, Google is responsible to earn income for their investors. If money can be made by selling the information to drug companies, insurance companies, or any other interested party willing to pay top dollar, won't this encourage investment in Google?

Vicky

[Fiona]

Ok, I'll spit it out, why I won't spit. For me, personally, there are many emotional reasons, and they may sound crazy, but you asked.

I have no trust at all about what will be done with the information. Having a diagnosis of PD at age 32 has been bad enough in terms of fixing the world's expectations for me in a certain direction, and I need all the strength and positive imagery and energy I can get to create the reality that I want to have. Judgment has an emotional energy which can really affect me. I need the people who are my caretakers or have information about me to believe in my possibilities for health absolutely.

I cannot see how this information will help me. If anyone were to know that they had the genetic markers for PD, what would they do about it? Someone said, well, they could exercise more. Please. I want to do my best to have the healthiest possible lifestyle anyway, and if there's not some specific treatment which will ward off whatever potential condition your genetic material says you could get, then what is the point of knowing about it? Then it hangs like the sword of damocles over your head, and starts to fixate in your brain, and becomes a self-fulfilling prophecy. I'd rather focus on what's right with my body then what's wrong with it.

In terms of helping future generations, at this point there has not been enough positive work done to impress me that that will happen. I think that the toxicity of our environment is a major factor in diseases like PD, and I would much rather see research and scientific effort that starts to address that. Meanwhile, with all the advances in science and technology, they haven't found a cure for anything in over 40 years. I think we all have cancer cells all the time, and our bodies are continually finding ways to overcome them...or not. I would be much more interested in supporting a process that focuses on how to maximize and strengthen our systems, how to improve the environmental situation and the increasingly terrifying toxicity of our more and more genetically modified world - I think Monsanto is the devil incarnate - than to be gauging one's predetermined destiny. I assume about myself that I have the potential to get any kind of awful disease...the question for me is how am I going to live the most positive life I can live, no matter what my proclivities are.

Finally, I feel that the whole slant of Western scientific thought is reductive, trying to carve away the context of problems and find that one little thing that is the magic button (that can then be patented and marketed.) I think that is the wrong direction. I think understanding of the context of things needs to be increased. When I read about scientists creating an artificial brain, that sounded to me like the biggest waste of time in the world. It seems to me to be completely ignoring the mystery of the way things really work, which is complex and multi-systemic.

This is all very personal obviously, and I'm sure many find my point of view ridiculous. But you asked.

[indigogo]

Fiona - just want to say that I believe everything you say is valid; as is Paula's point of view.

Deciding to do this testing is an extremely personal choice, one that should be taken only after being fully informed. And once informed, the decision to not participate is as fully justifiable as deciding to participate.

I hope 23andMe will be able to release an entertaining video without sacrificing the serious nature of this choice they are asking patients to make.

My only hesitation to participating was voiced well by you, Fiona - I believe in my own basic wellness, and I don't want to be influenced by potential negative indications contained within my DNA.

I also believe that not enough is being done to fix our environmental mess and to hold the polluters responsible.

But that doesn't negate the need for genetic research to move forward. This kind of science is scary - it's one of the last frontiers. We don't know what lies over the horizon in our own bodies, but since we are now being given the opportunity, I want to take a peek, while giving a boost to the research.

I decided to go ahead with the test - my curiosity has the best of me, and this seems like a safe, secure, easy and affordable way to satisfy that curiosity and potentially do some good.

I could have just as easily decided "no" - and I would have wanted the PD community to understand. I'm confident 23andMe will eventually meet their goal without using coercion or relying on PD peer pressure.

[Fiona]

Hi again Carey, Paula, and everybody.

I just want you to know, I don't feel pressured. I know that we all know that any decision we make in this crazy PD world is extremely personal, and I don't blame any of you for your decisions or conlusions. To the extent that I am able to, I don't mind sharing my reasons, which is why I posted.

As to whether genetic research is the future of medicine, or of PD treatment, I am not so sure. Since the incidences of early onset PD seem to be increasing significantly, even in communities where the population is not increasing, how could we not wonder whether the causes are more from the air and water we consume, all that crap that goes into processed food these days, the increasing genetically modified crops that threaten to make any other kind of farming on the planet impossible, whatever. WHERE IS LAMARCK WHEN WE NEED HIM?!?!?!

[bandido1]

Good thread & excellent responses so far. Just one clarification. Google is not the originator of this offer. Sergey Bin, a Google co-founder is a major funding source for the discounts being offered to induce Pd patients into participating. Sregey's wife is however, a co-founder of 23and Me and Sregey's mother is a PD patient. He has more than one reason to want to see the results of the study. Though innuendo seems to suggest otherwise I have no other interest in this project other than to fufill our collective objective--find the cure. Bob C

[indigogo]

Fiona - I don't think the science has strayed from the theory that exposure to an environmental toxin triggers something in us to cause idiopathic PD - the huge majority of most PD cases today (mine included). But it's like everything else in science - we don't know unless we look. Same with embryonic vs adult stem cells - don't close any doors to research. I think that also means looking at patients who choose an alternative route and what they are doing to maintain and even improve their health.

My motivation for joining the 23andMe project was to build the database; I don't think it will mean a new treatment or cure - right away - but who knows?

That's been my biggest complaint with the PD research establishment - complacency and a failure to learn about the disease by listening to the patient. Consequently, we haven't progressed much beyond Sinemet and DBS for decades, and it wasn't until the last 5 years that depression (and other non motor symptoms) as a PD comorbidity was even admitted out loud.

We won't know anything unless we look behind every door and within every patient.

[girija]

Hi all,
Good morning!
Just a few days ago I started a thread on this topic and but my computer crahsed and lost it. I have been thinking about 23and me and the genetic analysis a lot. Discussed it with family and friends. Some of the questions from Fiona sound very familiar.......My mom didnt want me to get the analysis done because at this point, genetic information is not going to cure me. On top of it, it would cause tremendous amount of stress knowing that there is a genetic defect and my daughter might have inherited it. If she has it, what next? This was the question she asked me. While I agree with her analysis and understand her concerns, my rationale for going to thru this is as follows:
Unless I participate I donot know what I have. Curiosity and hope that it might lead to something productive and protective are my main reasons.

.23and me is analyzing for a few genes right now, DNA analysis will tell me what are the mutations or alterations that are responsible for PD and quite possibly will also tell me what the genes that provide protection from PD and/or counteract the negative effects of mutated ones. Protection might come from folate or vit D or CoQ-related pathways. (Eg., before the march of dimes study, who would have believed that neural tube defects can be prevented with simple folate supplements?). If this turns out to be the case, I would want to load up my kid with those supplements!!!

DNA analysis may not tell me anything right now, but the data will be there and can be reanalysed when the time is right. Examples of old, stored data being useful are plenty. Discovery of reverse transcriptase 10 years prior to its utility as a target for HIV treatment is an example.

Being a strong believer of science and an eternal optimist, I think I can win this battle with PD or at least stop it from touching my kid.

I understand each has his/her own rationale for the decisions. I am sharing mine with you.
Girija










QUOTE=Fiona;492536]Ok, I'll spit it out, why I won't spit. For me, personally, there are many emotional reasons, and they may sound crazy, but you asked.

I have no trust at all about what will be done with the information. Having a diagnosis of PD at age 32 has been bad enough in terms of fixing the world's expectations for me in a certain direction, and I need all the strength and positive imagery and energy I can get to create the reality that I want to have. Judgment has an emotional energy which can really affect me. I need the people who are my caretakers or have information about me to believe in my possibilities for health absolutely.

I cannot see how this information will help me. If anyone were to know that they had the genetic markers for PD, what would they do about it? Someone said, well, they could exercise more. Please. I want to do my best to have the healthiest possible lifestyle anyway, and if there's not some specific treatment which will ward off whatever potential condition your genetic material says you could get, then what is the point of knowing about it? Then it hangs like the sword of damocles over your head, and starts to fixate in your brain, and becomes a self-fulfilling prophecy. I'd rather focus on what's right with my body then what's wrong with it.

In terms of helping future generations, at this point there has not been enough positive work done to impress me that that will happen. I think that the toxicity of our environment is a major factor in diseases like PD, and I would much rather see research and scientific effort that starts to address that. Meanwhile, with all the advances in science and technology, they haven't found a cure for anything in over 40 years. I think we all have cancer cells all the time, and our bodies are continually finding ways to overcome them...or not. I would be much more interested in supporting a process that focuses on how to maximize and strengthen our systems, how to improve the environmental situation and the increasingly terrifying toxicity of our more and more genetically modified world - I think Monsanto is the devil incarnate - than to be gauging one's predetermined destiny. I assume about myself that I have the potential to get any kind of awful disease...the question for me is how am I going to live the most positive life I can live, no matter what my proclivities are.

Finally, I feel that the whole slant of Western scientific thought is reductive, trying to carve away the context of problems and find that one little thing that is the magic button (that can then be patented and marketed.) I think that is the wrong direction. I think understanding of the context of things needs to be increased. When I read about scientists creating an artificial brain, that sounded to me like the biggest waste of time in the world. It seems to me to be completely ignoring the mystery of the way things really work, which is complex and multi-systemic.

This is all very personal obviously, and I'm sure many find my point of view ridiculous. But you asked.[/QUOTE]

[paula_w]

i haven't been in today except for a few min earlier before anyone had posted.

and your answers are reasonable. i'm kind of like bandido in my thinking. i think it makes sense to form a database of info to see what new things might turn up. We can look at other results or we don't have to. it might very well be that toxins are at the root of all the gene mutations.

i work with goals, and especially look at short term goals to get to the long term. i was a teacher, had to write those objectives to get to the big one. i do the same in whatever i do now. it isn't looking like there will be a cure in my time. but they could stumble on some symptom relief.

if you haven't read jim0918[?] post about Shands and getting recalibrated there, i would suggest you do. he had a rope around his neck one night and now he has his life back!

Fiona, i agree that man probably will never overcome the complexities of the human body. But the connections are so fascinating..so interesting.

you just never know. girija send your spit pictures please.......i was wondering if anyone would say, 'i just haven't gotten around to it...yawn." lol i still haven't called shands.....it's the nature of the beast.

ok 'rescue me' that's fx isn't it?

thanks for another honest and open discussion..

paula