Parkinson's Disease Tulip


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Old 07-25-2010, 12:08 PM #1
paula_w paula_w is offline
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Default 23andMe

from the 23andMe team:

"Thank you for purchasing 23andMe's Personal Genome Service. Our laboratory has received your second saliva sample but unfortunately they were not able to analyze it sufficiently to meet our quality standards. The laboratory made multiple attempts to obtain sufficient DNA for the analysis but again were unable to do so. "

They continued to say that they could not send me a 3rd kit and are refunding my money.

The email title, expecting results, threw me off . it was:
'Multiple Sample Failures"

I'm curious naturally to know if anyoe else received a similar email and what it could mean. They offered no explantion [medically] or how common it is.

They apparently have some system deficiences. Debi pleaase email me when you think it is no longer appropriate to keep the video online. it involes fox foundation too.[the video does that is.]

thanks and i hope they get back on track with this pd project. Then I'm also hoping that not having DNA in my spit isn't a bad thing. One more thing to learn about.

paula
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"Time is not neutral for those who have pd or for those who will get it."
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Old 07-25-2010, 12:31 PM #2
lindylanka lindylanka is offline
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Paula
You must be unique -
are you human, alien
- or zombie -
your DNA is missing!
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Old 07-25-2010, 01:13 PM #3
paula_w paula_w is offline
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I see dead people.
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Old 07-25-2010, 01:39 PM #4
LindaH LindaH is offline
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Paula, i do n't know if this has anything to do with the email you received, but 23 & me has been under investigation by the GAO, along with 3 other genetic testing companies. A congresional hearing before the House Energy and Commerce Committee was held last week. One result is that the FDA will start having oversight for genetic testing companies

The first article below from Slate was posted on the pipeline mailing list yesterday. We found the other 2 today.

So we have to wonder how these new developments will affect 23&me's PD genetic research program ?

From Slate , 7/23/10
"Feds Target DNA Company Belonging to Sergey Brin's Wife"
http://www.thebigmoney.com/blogs/fee...gey-brins-wife


From AP: (firday)

"GAO investigators say DNA tests give bogus results

"WASHINGTON — A government investigator told members of Congress on Thursday that personalized DNA tests claiming to predict certain inheritable diseases are misleading and offer little or no useful information.
An undercover investigation by the Government Accountability Office found that four genetic testing companies (includidng 23 & me) delivered contradictory predictions based on the same person's DNA. Investigators also found that test results often contradicted patients' actual medical histories..."

"The GAO presented its findings at a Congressional hearing to scrutinize the personalized genetic industry, which until recently operated below the radar of federal regulators."

"In June the FDA issued letters to several genomic testing firms, asking them to submit their products for federal review.

...The agency is in the process of meeting with companies and may take additional actions against the companies and their products"

Full article at
http://www.google.com/hostednews/ap/...B5bsgD9H49V3G0

From Discover Blog
"Government Sting Operation Finds Problems With Personal Genetics Tests"

http://blogs.discovermagazine.com/80...enetics-tests/

"Here at 80beats, we’ve gone over some of the potential problems with these tests. DISCOVER blogger Ed Yong covers them in great detail in a post he wrote this week after getting his genes tested by 23andMe, including the dearth of data appropriate for interpreting results if you’re of Asian rather than European descent, and deciding whether to peek into the data that says whether you have a much higher than average risk for Parkinson's Disease." (see: http://blogs.discovermagazine.com/no...enes-tested-an d-the-birth-of-science-writer-disease-risk-top-trumps/

"The GAO report suggests the companies still have a long way to go in drawing accurate conclusions. The agency submitted DNA samples from five staffers to four different genetic testing companies. When considering the same disease, the companies’ results contradicted each other nearly 70 percent of the time, according to GAO. In response to the same patient’s DNA, one company claimed he was at above-average risk for prostate cancer, a second said he was below average and two others said his risks were average [AP].

The FDA is holding meetings this week, trying to decide how it will regulate the tests."
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Old 07-27-2010, 08:04 AM #5
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Default clarification...

I think it is important to tease out some of the issues being raised by these investigations ...

1) On accuracy...The companies technology are likley generating the same results -- DNA codes are not showing up differently. The "controversy" is in the interpretation of the codes. Based on limited studies in human populations (yes, mostly of European decent--that's where science has been funded over the last several decades so that all we can draw from at this point), what can we "say" about the risk factors for common diseases. The inconsistencies lie with the varied interpretation of potential risk. By the way, that is the case with much in medicine. There are very few things we know with certainty.

2) On access to information...The FDA investigation is focused on whether these tests should be regulated in a fashion similar to a medical device. There is a concern (beyond "accurate" interpretation of data I mentioned above) that people aren't prepared / capable of handling the data. The examples cited include concerns if people find out they are "at risk" for something and then decide to commit suicide. This part of the discussion is more about information guardianship--can people "handle" their "truths".

There is much going on here...
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Old 07-27-2010, 08:09 AM #6
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Default PS...Paula

I don't know the answer to your question but I've reached out to Lizzie's replacement at 23andMe to see if you can get a better/clearer explanation.

Debi
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Old 07-27-2010, 10:08 AM #7
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Default It's about to go viral...

If I may but in or threadjack here...I believe this is a reaction to a competing genomic/genetic health profiling company's desire to make this sort of testing available to the masses OTC at Walgreen's. The FDA freaked when they caught wind this was going to happen, so obviously 23andme as an innovator in this field stands to be raked over the coals and used by the government as an example. I don't think there is any other bar other than the 23andme's standard, right now.

The story...newsinferno.com

Mind you, the test will at Walgreen's will only cost $19.99 and people would be privy to troublesome results. I hate to say it but this is also the government saying that Joe Q. Public are not savvy enough to realize that a SNP is just a SNP. It's a small fraction of all that is required for a disease to take its course. In other words, they are saying that some not not be able to understand that having a SNP variant does not mean that you will get a disease.

One can imagine all the lawsuits that might transpire once the mass marketing of tests like this starts. I say just make people sign a disclaimer so they are responsible and have chosen to obtain this info; something is needed so that they can not later sue for something ludicrous like their spit blinded them in one eye.
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Old 07-27-2010, 02:29 PM #8
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Thanks Debi for putting these news reports on genetic testing in context. I think there will be differences among the investigated companies that will become evident.
I came across a web page about the hearing from the Subcommittee on Oversight and Investigations.
There are hearing documents and testimoinies (and a video ) at:

http://energycommerce.house.gov/inde...ticle&id=2083: hearing-on-direct-to-consumer-genetic-testing-and-the-consequences-to-the-public-health&am p;catid=133:subcommittee-on-oversight-and-investigations&Itemid=73

The site includes documents such as hearing testimonies and also recordings of some of the statements made by the companies under investigation (they are not identified) -- statements such as --your DNA could be "fixed" -- just buy the supplement the company was also selling.
One customer was told she would definitely get breast cancer. Another was encouraged to surprise her boyfriend with his genetic profile -- just find a way to collect his saliva without his knowing.
Clearly there is a need for regulation, even ifits only a small number of companies misleading the public.

23&Me's lawyer also testified and thought she did a good job of presenting their viewpoint. She mentioned the PD study briefly.
It still is not clear how this industry shake-up is goin g to affect the study

Last edited by LindaH; 07-27-2010 at 02:35 PM. Reason: typos
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Old 07-27-2010, 03:29 PM #9
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I must agree with Laura's assessment that the governement and the medical community don't think that regular people are capable of getting the test results and being able to resist going crazy because they have misread something or don't know what it means.

Find me a doctor or anyone else who knows everything that test results (of any kind) indicate. I have been told "I don't know," a dozen times in the last two months by doctors (which by the way, I think is a vast improvement over the know-it-alls that have largely populated the ranks of my former doctors).

What they generally cannot get in their heads is that there is a literate public out here and (largely with the help of the internet and the attendant search engines) that public is capable of "learning" how to read tests as well as anyone. Yet another loss of contol thus deminishing the mistique that once surrounded and elevated the medical profession.
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Old 07-27-2010, 04:11 PM #10
paula_w paula_w is offline
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Thumbs up Wow!!

linda,

you tell me about this and i know coming from you its gotta be good but actually just got around to viewing the video. thank you so much for more of your typical excellent investigative research.

Now i understand the investigation. let's just hope they find out who the good guys are and who aren't. we need this genetic information but it is worthless and dangerous if misinterpreted.

if you have not watched this video i recommend it and i'm going back to read the testimonies.

thanks Brenda Starr,
p

http://energycommerce.house.gov/inde...rticle&id=2083:
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