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» LymeNet Flash » Questions and Discussion » General Support » FDA shuts down 23andMe

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Author Topic: FDA shuts down 23andMe
Crawgir1
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They think we are too stupid to be able to use the information apparently:

http://reason.com/blog/2013/11/25/fda-shuts-down-23andme-outrageously-bann

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Carmen
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No they dont think we are too stupid. They think we are too smart and we just might stop purchasing all their dangerous drugs that do interrrupt genes, and we might stop paying all their doctors that the FDA and AMA and the pharmaceutical industry controls.
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map1131
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Well I guess I need to wait until they clean up the language on the website. I'm very interested in doing this and I'm sure they will meet the FDA rules and regulations.

After all we know how trustworthy and respectable our gov agencies are at protecting us?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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GretaM
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Oh great!

What next!?
[shake]

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steve1906
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The site seems to be still active/working?

www.23andme.com/health

--------------------
Everything I say is just my opinion!

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Lymetoo
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And here I was seriously thinking about taking the tests. I think they are cutting into someone's profit.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymednva
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One thought I read is that the couple who started it are going through a divorce. He started Google, and was funding this, too, apparently. So the thought is that the divorce could be contributing to this.

I was just on their site and it's still advertising the kits, so if you are interested get one now. Once you have it I don't think the FDA can do anything.

--------------------
Lymednva

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Lymetoo
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Yes, I heard there was a divorce involved too.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Judie
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Well, I put it on my credit card and the site took my order, so we'll see if it's really shut down.
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zero
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Oh what the hell [Frown]
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map1131
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I'm still going to do it someday, divorce or not?

[dizzy]

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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Not if it is unavailable due to the divorce, Pam!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Carol in PA
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FDA Clamps Down on Gene-Testing Company

Published: Nov 26, 2013
By Joyce Frieden, News Editor, MedPage Today


The gene-testing firm 23andMe has not received approval for its product and must stop marketing its test for the time being, the FDA announced.
continued...
http://www.medpagetoday.com/Genetics/GeneticTesting/43145

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Crawgir1
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Update: http://blog.23andme.com/news/an-update-regarding-the-fdas-letter-to-23andme/
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lymednva
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The kits are still for sale tonight.

--------------------
Lymednva

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Carol in PA
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Oh dear, when I read that, I thought you said
"The kids are still for sale tonight."

From what I'm reading, it sounds like the lab can still function, but they cannot advertise.

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beaches
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[Big Grin] Carol, that was funny.

So do you think if we order the kits we can get results?

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zero
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Could someone please tell me what a divorce has to do with this? I am too sick to read the articles really.

I was planning on getting this testing soon as it is affordable for me and could really help a lot. [Frown]

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beaches
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IMO the divorce has nothing to do with it.

Seems like the FDA swooped down on this company for whatever reason.

Hopefully we will still be able to order test kits and have them processed by this company.

I haven't checked the website...anyone??

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map1131
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I was joking about the divorce stuff, When they get right with FDA, I'm in or even before.

Christmas present to myself. Know my genes.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Judie
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A family member is freaked out that I want to do 23andme after reading this article from Scientific America.

http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda&page=2

I read through it, and then read the VERY intelligent comments after it.

I told my relative to read the comments and then we'd discuss it.

If anything, my personal data is already out there. Even when I do a google search for my name, too much stuff comes up that's out of my control.

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Crawgir1
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UPDATE ON 23andMe Website:

Welcome to 23andMe.

At this time, we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.

We are continuing to provide you with both ancestry-related genetic tests and raw genetic data, without 23andMe’s interpretation.

If you are an existing customer please click the button below and then go to the health page for additional information. If you are a customer who purchased before November 22, 2013, you will still have access to your health-related results.

We remain firmly committed to fulfilling our long-term mission to help people everywhere have access to their own genetic data and have the ability to use that information to improve their lives.

Upon entering the site, please confirm you understand the new changes in our services.

I understand that 23andMe only sells ancestry reports and raw genetic data at this time. I understand 23andMe will not provide health-related reports. However, 23andMe may provide health-related results in the future, dependent upon FDA marketing authorization.

(Apparently we can still use their services, but need to use genetic genie or another service to process the raw data into something understandable.)

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Lymetoo
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quote:
Originally posted by zero:
Could someone please tell me what a divorce has to do with this? I am too sick to read the articles really.

I was planning on getting this testing soon as it is affordable for me and could really help a lot. [Frown]

-

quote:
Originally posted by lymednva:
One thought I read is that the couple who started it are going through a divorce. He started Google, and was funding this, too, apparently. So the thought is that the divorce could be contributing to this.

I was just on their site and it's still advertising the kits, so if you are interested get one now. Once you have it I don't think the FDA can do anything.



--------------------
--Lymetutu--
Opinions, not medical advice!

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Judie
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I just got this in my in box after purchasing the kit and sending in the sample this week:

"Dear 23andMe Customers,
Thank you for your recent 23andMe purchase.

At this time, we have suspended the health-related part of our service to comply with the U.S. Food and Drug Administration’s directive on November 22, 2013 to discontinue new consumer access during our regulatory review process.

As a result, this means we will not be able to provide you with access to the 23andMe health-related results from your purchase.

We will be able to provide you with both ancestry-related genetic information as well as your raw genetic data, without 23andMe’s interpretation.

We sincerely apologize for the inconvenience.

We understand this is not the product you purchased. If you would like a full refund for your order, we encourage you to click here and follow the on-screen instructions.

Requesting a refund will inactivate the kits listed below and they may be discarded: (personal info removed)
Please stay tuned to the 23andMe blog for additional information during the regulatory review process.

Sincerely,
The 23andMe Team"

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kidsgotlyme
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I am so thankful we got this done for our DD before the health related part got shut down. I only wish we had done it at the same time.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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map1131
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I believe they will become doctor ordered test only. I'm okay with that. I think a physician should be involved with patient in this testing.

Of course it will help if you have one of doctors that is lyme aware and knows that some of this info is related to the chronic illness you have.

I am fortunate that I would have taken my results to my PCP and he and I would have discussed some possibilities on my results.

My PCP has been with me and was lyme aware and called it lyme with negative Lab Corp in July 99.
He was also excited when Igenex in '02 came back highly CDC positive and I went to a LLMD.

Oh, how I wish I hadn't put this off. Rats!!!! With FDA no telling how long getting it back into system will take?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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marypart
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Just spotted this.. nice to know 23andMe are getting a bit of suppport.

http://medicalxpress.com/news/2014-01-academics-decry-fda-crackdown-genome.html#ajTabs

Mary

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

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Catgirl
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The raw data is still really good. It's what I used the most anyway. You run it through genetic genie or promethius (sp?) and it will give you tons of info. For those interested, get it while you can.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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faithful777
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Does any other company do genome testing like this?

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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surprise
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Faithful, I went to Dr. Amy Yasko's site to see if I could post you a link for her extensive MTHFR testing,

and I didn't see it there! (She offers all kinds of other health testing still)
Couldn't help but wonder: is she banned now too?

You can still get the very basic testing to see which 2 genes you are carrying, but further than that, I don't see it anymore.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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surprise
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I did find Dr. Amy Yasko's test, although it's $495.

http://www.holisticheal.com/dna-methylation-pathway-test-kit.html

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Dekrator48
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I got this newsletter from Dr Ben Lynch (MTHFR.net) today that contains info about the status of 23andme:


https://fd147.infusionsoft.com/app/hostedEmail/190274/ccba383bcccb720d?inf_contact_key=e87df16fbf6097c9ec7cb014941a5ff9

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Judie
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I just posted this in another thread. This site will to the methylation profile for free.

Nutrahacker
https://www.nutrahacker.com/index.html

MTHFR.net charges for their profile. I don't agree that only a doctor should tell you if you're at a high risk for a health issue (which Lynch says in the letter).

Everyone's entitled to their own opinions, however, I was looking forward to what 23andme had to say and the 23andme website made it very clear to discuss ANY health concerns with a doctor.

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lymednva
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I think Ancestry.com also does the same testing. They just don't say they give you medical info. But the raw data should be the same.

--------------------
Lymednva

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map1131
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Well I just went to the site 23andme and ordered my kit. It's been shipped.

Looking forward to finding some more pieces of my puzzle. Any pieces is helpful.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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