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23andME PD Genetic Research

62 posts in this topic

So glad you pointed out that section! I either overlooked it or did not understand what I was seeing. I am at slightly lower odds for Parkinson's and moderately increased odds of essential tremor! I will definitely share this with my neurologist next time. Guess I will buy a lotto ticket too.

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I received my test kit in March...any know if it's still good and can I still send it in?

 

Patricia

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4/20/14

Got my free spit bottle and an invitation to take a million survey's (something I try to avoid). I spat spit in my bottle . I've got 50 percent of the surveying done, and the wait is on for the DNA results. Let you know what percentage I fall in.

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Hi tlstarkenberg,

 

I did that over two years ago. I fell in the unlikely to get PD class, but found hundreds of 3rd to 6th cousins all around the world who wanted to know my genetic history!

 

Dianne

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I also fell into the unlikely class and found cousins I never heard of.  Mom knew of a few and said not to make contact!!! Too funny! 

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I would love to be able to take this test through 23andme but I live in the state of Maryland and they will not allow people to take this test. I have thought about having it sent to a friends house in another state. I did do a DNA test through FamilyTreeDNA but it does not check for medical markers.

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Got the kit in the mail the other day...right now not sure if I really want to know what other future problems could be bouncing around in my body...have to give it some thought.

 

LOL!  I understand, and I have the same concern.  :-)  I don't think I could take one more diagnosis of anything!

 

Nice to  see you posting, Patricia.

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Received my results from 23andMe last week. For what it's worth, apparently the FDA has asked them to stop providing the 'health assessment,' so only ancestry information and a searchable database of raw genetic information are reported now. No risk of hearing bad news you're not ready for.

 

I found a nonprofit Wikipedia-style website that lets people search what the raw genetic information might mean: http://www.snpedia.com/index.php/SNPedia . It's pretty good, with links to published research. There's even a page specific to Parkinson's genetics: http://www.snpedia.com/index.php/Parkinson%27s_disease .

 

With a little cutting and pasting, you can use the SNPedia site and the raw data from 23andMe to check risk for Parkinson's and other conditions. For example, I found I have no increased PD risk from LRRK2 mutations, but did find the version I have of a SNP called Rs9652490 carries 2X Parkinson's risk.

 

SNPedia also provides a service called Promethease http://www.snpedia.com/index.php/Promethease that uses 23andMe data to create a health assessment report similar to what 23andMe used to provide. Not sure if I'm ready to explore that yet, for the same reasons mentioned by others up thread.  

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I tried clicking on the link that allows you to take the test for $25. but it no longer works. Shop Guy when did you order your test? Was it through the link that provides the test for $25? I took a DNA test through Family Tree Finder with the intent to find cousins unknown to me. Most of the people I contacted said they don't see a relationship in their tree compared to my tree. I think my connection to these "new" cousins is an unknown ancestor they have not found.

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Hi Janet,

Here's the link I used: https://www.23andme.com/pd/

Click on the "Join Today--I have Parkinson's" tab. Should be a completely free test for people diagnosed with PD. My test arrived early December, and I had my results a bit sooner than the 4-6 weeks they say it takes.

--David

Edited by ShopGuy

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Shop Guy,

Thank you. Just went there and registered. I am not sure they will send the test to me as I live in Maryland. 23andMe does not allow Maryland residents to purchase a test kit. It has something to do with Hippa laws and state laws. Maybe because I have been diagnosed with Parkinson's they will make an exception. I will post here if I receive the kit.

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It's interesting.  What is funny is I hated Brussel Sprouts as a kid.  Could not stand them, but rest of the family loved them.  These days I love them (lightly roasted, with garlic,yum)

 

fully heterozygous, age related tasting variation You are heterozygous at all 3 of the SNPs which are known to influence the ability to taste bitterness. This means you are better than average at detecting bitter tastes while young, but that this ability will decrease to less than average during adulthood. As a child you will probably hate brussel sprouts, and by early adulthood will discover that olives and brussel sprouts now taste good. A 2010 study shows the change bitter sensitivity which occurs over the lifespan (from bitter sensitive to less so) is more common in people with this genoset. Children with this genotype could perceive a bitter taste at lower PROP concentrations than could heterozygous adults. The threshold for adolescents was intermediate. The 3 SNPs are rs10246939, rs1726866, rs713598 in the gene TAS2R38.

 

more likely to be able to smell asparagus metabolites in urine 1.67x more likely than people with (G;G) to be able to smell the methanethiol produced after eating asparagus.

 

Intermediate riser. Wakes up at a time between the AA and GG genotypes.

 

Fast Caffeine Metabolizer. Unlike the majority of people, caffeine is broken down faster in your liver, so it has less effect on you. Supposedly this decreases heart attack risk, although other studies show caffeine is generally good for the heart. Caffeine will be less effective at preventing Breast Cancer, Alzheimer's Disease, and Parkinson's disease. Caffeine will not make your breasts smaller. 

 

Parkinson's -- increased risk.   For anyone wondering.... typically it is 1 in 1000.  So even with the genetic, being 2x normal population it means 1 in 500.   So for those reading the genetic reports, take it with a large does of salt. 

 

Only one that seems interesting, for medical, is 4x likely to have Hemochromatosis.  Condition of too much iron in my blood.  Irony is I'm always good when donating blood as my numbers are always good, so that is something being checked every 8 weeks.  

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I received my answer from 23&me that because I live in Maryland I am not allowed to take the genetic test. I don't know now if I use somebody's address outside of Maryland if they will send me the test.

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I did this a few weeks ago and they are now able to give some health related info again. I came back with the variation of the LRRK-2 gene with a very high likelihood of having PD. I also have a very high chance of getting Alzheimer's and a few auto-immune diseases.     

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I received my answer from 23&me that because I live in Maryland I am not allowed to take the genetic test. I don't know now if I use somebody's address outside of Maryland if they will send me the test.

That's very interesting that Maryland doesn't allow the genetic test.  Do you know their reasoning on this?

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Linda, I live in New York and to do the test I had to sign a waiver that I would not give my sample or mail it back from the state of NY. It has something to do with New York classifying 23 and me as a medical lab, but since they didn't meet state regulations/standards it was illegal for them to collect samples in NY. I assume Maryland has similar, but more restrictive regulations. I had to go across the river to New Jersey to spit in the tube and mail my sample.

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Thank you, Laura.

 

Now back to why I started this post... Is it possible that a Micrographia Srceening test for children be used? They could print their name on a sheet of paper, letting a trained eye either dismiss or confirm a potential diagnosis of Parkinsons, all the while without noticeable physical movement dead giveaways. This why I say that there is no such thing as YOPD. Only "Parkinsons and people with the onset of Advanced Aquired Parkinsons [AAP]."  If we could tell of a possible furture life that will have to deal with all the symptoms of Parkinsons, why not let them prepare for this job's undertaking. [And I am NOT meaning to sound macabre.] They could start with the good diet of anti-ox foods and vitaman E supplements. The sceintific would an can now view Parkinsons from a different angle! Not from standpoints of the already afflicted!

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Just got my 23andme test results and they currently do not provide health risk assessment info per FDA directive.  Is there a readers digest version of how to interpret the raw data for genetic markers for PD?  Thanks for any help.  

 

DB

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Gravdav

 

I totally get what you are saying...and early detection would be great. There are forum members who say they have had PD since childhood, but not diagnosed until after fifty. I think they are finally recognizing it is not an old age disease.

 

Like you, I would think it would be easy to get some kind of early testing. Specifically, on handwriting...which I know you used just as an example...I am in stage 3...I have little trouble with hand writing... I write big...and not slanted....if I try to,write small. Yes, it is not good....what I am saying that hand writing is a broad subject matter to best indicate PD early...but I agree with you totally that early detection would be good...at first, not as helpful...as later, when they redefine PD and apply more research because it will be proven that PD spans a much larger demographic than thought.

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Signed up  yesterday on the 23andme website. Answered a bunch of questions. Now just have to spit and send the sample when I receive the packet. Interested to see the outcome, but kind of apprehensive too.

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my understanding is that you have to have the results analyzed by a doctor in order to get useful information about

how you might address your PD (what kind of supplements, etc.).  I am waiting for my results now, and I have a very

research oriented psychiatrist who is going to read them for me.  I know there are services that also do this, though 

obviously it is better with a physician who has been involved in PD care. 

 

Still no response from my email request from 23andMe for clarification but I have been reviewing the results with a little more clarity. If I am understanding correctly, it says I have a decreased risk for PD ("slightly lower odds of developing PD, between 1 and 0.67 times typical odds/risk.) I don't know what to do with this information but will certainly share this with the Dr. next visit. The other results are interesting, so far nothing earth shattering. I guess I was under the delusion that this test would either exclude you or include for PD.

s

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I received my results about a week ago. The 23andme results are very general and do not discuss analysis relating to Parkinson's. You can go to Promethease.com and upload your 23andme results and get a detailed report regarding your genetic results relating to many health issues for $5. It took about 3 minutes to get the reports by email.

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I received my results about a week ago. The 23andme results are very general and do not discuss analysis relating to Parkinson's. You can go to Promethease.com and upload your 23andme results and get a detailed report regarding your genetic results relating to many health issues for $5. It took about 3 minutes to get the reports by email.

I did this... it was definitely worth it!  23andMe does provide genetic counseling that can go much deeper into the PD genes and more, but I have mostly looked online at 23andME forums and the report listed above.  I am sure the genetic counselor will provide a lot of help, I am just not ready to do it. 

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I received an email today that said it was from 23andme, saying that unless I sent the name and address of my treating doctor via return email, I would not be allowed to participate in the study. I refused. I am sharing this because no reputable research organization would ask for such identifying information via email. If you get the email, I recommend you delete it and contact 23andme through their secure website only.

 

Dianne

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