23andme - DNA Sequencing Services...

MakeEmTalk

The Force is Strong With This One
Alana said:
Hi MakeEmTalk, and welcome to the forum. It is customary for new members to write a little intro in the new members section about who they are (anything about you that you feel comfortable sharing) and how they found this forum. This gives us all a chance to get to know you a bit better and welcome you aboard.

Thanks Alana.
 

Tracy Anne

Jedi Master
I would be almost certain that the companies involved in this will be gathering non indentifying data to use for statistical purposes. Having worked as a Medical Coder for 20 years it would not surprise me one bit. Personally I would not want to give them the privilege of having my DNA when I have had to pay out $99. They should be paying me for it......if this is the case. I can understand how interesting it would be to discover your risks for certain diseases and also your ancestral line.
 

Thomas Alan

The Living Force
I missed this thread until now. It certainly would be interesting to have that information. I am especially interested in my colon cancer risk, both my mother and grandmother died of it. Also the ancestral lines would be fun to know. I know that I have Germam-Russian heritage on my mothers side, German, French and Irish on my fathers. Who knows what else it the mix.

There is some risk, of course, that the information will be misused. But like has been mentioned much information about us has already been collected by many organizations.

I will think about this a little further before I decide whether to do it.

Mac
 

Zadius Sky

The Living Force
I haven't checked back into my account on 23andMe website for a while until today, and a notice came to my attention. Apparently, FDA stepped in. This will affect anyone who is thinking about getting the results of their DNA in regards to any health information (Inherited Conditions, Traits, etc.). Anyone who used this site before 22nd of November still have access to their health information, but anyone who will use it after that date will not.

So, just FYI.

23andMe Provides An Update Regarding FDA's Review

By Anne Wojcicki, Co-founder of 23andMe
December 5, 2013

After discussion with officials from the Food and Drug Administration today, 23andMe will comply with the FDA's directive and stop offering new consumers access to health-related genetic tests while the company moves forward with the agency’s regulatory review processes.

23andMe has been giving consumers access to health information for six years and is committed to finding the right regulatory path for our customers. I am highly disappointed that we have reached this point and will work hard to make sure consumers have direct access to health information in the near future. Our goal is to work cooperatively with the FDA to provide that opportunity.

We also want to make clear that we stand behind the data we have generated for customers. Our lab partner adheres to strict quality standards that are part of the Clinical Laboratory Improvement Amendments of 1988 — known as CLIA. These are the same standards used in the majority of other health and disease-related tests. We decided several years ago to comply with CLIA guidelines to be consistent with other types of laboratory testing and to assure customers about the quality of data.

As we work with the FDA to get clearance, there will be some significant changes to the site. Customers who purchased kits on or after the FDA’s warning letter of November 22nd will not have access to health-related results. Those customers will have access to ancestry-related genetic information and their raw data without 23andMe’s interpretation of that data. They may receive health-related results in the future, depending on FDA marketing authorization.

Customers who purchased kits before November 22, 2013 will continue to have access to all the reports they’ve always had.

This is clearly a much different service than in the past, so we are offering customers who purchased kits on or after November 22, 2013 a full refund if they wish. Those customers will get an email from 23andMe with details on the refund policy. Eligible customers who do not receive an email are encouraged to check their spam email folders for the email with their personalized instructions or contact our Customer Care Team.

Research is and will continue to be a significant priority for the company. The 500,000+ customers we have today have given us more than 250 million survey data points. You, our customer, have powered an incredibly important crowd-sourced research database that I believe can have a significant impact on the pace of discoveries and cures. We will continue our Parkinson’s, sarcoma, MPN and African American research projects and plan to launch more communities in 2014.

23andMe will also continue educational efforts to consumers, physicians and other health providers as we believe genetics will be an increasingly important part of all of our lives.

Finally, I want to say thank you to our customers for your support and your stories. Many of you have written in about how 23andMe has changed your life. It is rewarding for me and all the employees at 23andMe to serve our customers. I am committed to 23andMe and committed to being a pioneer in the genetics revolution.
 

Nook

Dagobah Resident
Zadius Sky said:
I haven't checked back into my account on 23andMe website for a while until today, and a notice came to my attention. Apparently, FDA stepped in. This will affect anyone who is thinking about getting the results of their DNA in regards to any health information (Inherited Conditions, Traits, etc.). Anyone who used this site before 22nd of November still have access to their health information, but anyone who will use it after that date will not.

So, just FYI.

On a related note:
_http://www.nytimes.com/2013/12/31/science/i-had-my-dna-picture-taken-with-varying-results.html

The woman who wrote the article set out to test 3 different direct-to-consumer DNA companies with varying results. She also talks about the FDA's closer look at 23andme, fwiw.
 

Minas Tirith

Jedi Council Member
Since almost everyone of my colleagues have taken this test (we work in a historical field, hence the interest for the ancestry), I checked if there was something here on the forum about this company.

sitting said:
And yes, Anne Wojcicki is Mrs. Sergey Brin. Which makes the funding issue almost academic. And the wider list of investors perhaps put there on purpose to allay privacy fears. Knowing what Google has done with user information, I would say the submission of one's DNA data to this company (Google linked) is indeed a double edge sword.

They seem to be divorced now, but I don't think that changes anything and Google is always a MAJOR RED FLAG. It might be true that DNA samples can be obtained through a variety of sources and very easily, but here they (whoever that might be) have the convenience of just having to access a single database.

MakeEmTalk said:
I don't know if the privacy notice in the OP is the entire privacy notice, but I notice that there's nothing in that language that prevents the company from 'sharing' your information. It in fact seems to cleverly skirt any mention of such a concept.

Who knows what nefarious activities could arise from someone else having your DNA information? Once it's in someone else's hands, you can't take it back.

If you're inclined to use this or any similar service, at least use a fake name, birthdate, and perhaps even have it sent to a friend's address.

Yup, totally agree. Question is, how would you pay? It's almost impossible not to leave traces with money these days.

M.T.
 

MusicMan

The Living Force
FOTCM Member
Hmmpphh. They can get your DNA without your permission. Just wipe the edge of a glass that you have used, for instance. A lot of cold cases are being re-examined, using DNA evidence.
Every blood test you ever had, what happened to the samples?
If you are involved in a motor vehicle accident, you will be required to take a blood test by law, in Australia.

Seems to be a purely academic argument.
 

mb

The Living Force
MusicMan said:
Hmmpphh. They can get your DNA without your permission. Just wipe the edge of a glass that you have used, for instance. A lot of cold cases are being re-examined, using DNA evidence.
Every blood test you ever had, what happened to the samples?
If you are involved in a motor vehicle accident, you will be required to take a blood test by law, in Australia.

Seems to be a purely academic argument.

I've said it before, but there is more to be concerned about from your regular medical providers. Security can be lax, and the opportunities for HMO and hospital workers to steal detailed, personally identified medical data and sell it are real.

The SNP data used by the various genetic genealogy sites has some use for determining health risks, but it is not (as a rule) full sequence DNA data, and I don't believe it is suited for use for legal identification purposes. I understand the FDA's concern with what 23andMe was doing and while I don't entirely agree with them, I do see that people are reading more into SNP data than what is really there from a medical standpoint.

These companies do store DNA samples in addition to providing the SNP data in digital form. Those stored samples could potentially be used for full sequencing, and I don't think it would involve the effort or cost required to take it from a drinking glass -- I think it would be a lot easier. If you are concerned about that possibility, don't use these services.
 

SOTTREADER

The Living Force
I recently came across some information on these companies that are busy collecting DNA samples from the population in the hope of helping you find out more about yourself.

As you'd expect, these companies are owned by people with ulterior motives, your DNA data will probably end up in places you had not anticipated and in the end, it'll all feed into the control matrix that is materialising all around us. The other thing about it is that by submitting your DNA, you essentially also give them the keys to those related to you who haven't submitted their DNA.... so as you've guessed it, for the price of you getting to know a little bit about yourself, they get to know a whole bunch about you and those related to you... plus in the background they can combine this data with a whole bunch of other data they have e.g. from social media, from all the tracking software on your smart devices etc to build an even more complete picture of you, your family etc etc.

All scary stuff really


and


How private should your DNA be? Should you have a say in how your DNA is used and who should have access to it?

Google is also operating in this space... if that's not enough to terrify you, then nothing is!

 

duyunne

Jedi Council Member
I recently came across some information on these companies that are busy collecting DNA samples from the population in the hope of helping you find out more about yourself.

As you'd expect, these companies are owned by people with ulterior motives, your DNA data will probably end up in places you had not anticipated and in the end, it'll all feed into the control matrix that is materialising all around us. The other thing about it is that by submitting your DNA, you essentially also give them the keys to those related to you who haven't submitted their DNA.... so as you've guessed it, for the price of you getting to know a little bit about yourself, they get to know a whole bunch about you and those related to you... plus in the background they can combine this data with a whole bunch of other data they have e.g. from social media, from all the tracking software on your smart devices etc to build an even more complete picture of you, your family etc etc.

All scary stuff really


and


How private should your DNA be? Should you have a say in how your DNA is used and who should have access to it?

Google is also operating in this space... if that's not enough to terrify you, then nothing is!


It’s not terrifying to me, more annoying than anything as I have a lot of questions as to what I am. I almost went for 23&me out of desperation, but I keep holding back last minute at their site. It’s sad but I’m going to step away from their service and hold out until something else comes around, perhaps something that honours privacy as part of its service model. I would be willing to pay more to guarantee that I’m not being sold off to eugenicists.
 

SOTTREADER

The Living Force
In the end, I think there is very little you can do in terms of being sold off to eugenicists, however, I guess you can make it rather hard for them by non-compliance...

Having said that, in this world, the overlords have a lot of things they can leverage to get our compliance to their intentions

- Need to survive and provide for our families can be leveraged to great extent by the overlords
- Our need for comfort can be leveraged as well e.g. convenience sold in the name of certain technologies such as smart devices, heck even TV from back in the day etc to well ultimately get us to surrender more than is stated on the tin (e.g. privacy with smart devices, advanced mind control with items such as TV and other forms of media etc)
- Curiosity can be leveraged e.g. on DNA where you give them your DNA in return for your curiosity being satisfied but God-knows what you surrender in the end, not only for yourself but your kids and their kids (who knows what brave new world we are ushering in?).

In the end, the machine is big and I suppose you can argue there is no stopping it so why bother or put up a fight? Right?
 

Adaryn

SuperModerator
Moderator
FOTCM Member
Article from 9 years ago: DNA from millions of newborn babies is secretly stored on NHS database

If "they" want your DNA (or want to know or collect whatever data about you), they'll get it no matter how hard you put up a fight. It's a lost battle (for anyone wanting to fight 'them' on that front). My personal take is that at least, you get something very interesting in return for providing such data. I can understand people's fears and concerns though. As in everything, it's a matter of personal choice. If you have strong misgivings, just don't do it.
 

Jones

Ambassador
Ambassador
FOTCM Member
If "they" want your DNA (or want to know or collect whatever data about you), they'll get it no matter how hard you put up a fight

And if you're older and they really want a sample, they can raid your garbage bin for hair, tissues, razors, or other hygiene or personal care products, pick up a cup you left on the table at a restaurant/cafe, medical samples for health tests, blood donations etc, etc.


The data base is big enough now that forensic genealogists can figure out what family a cold case John/Jane Doe belongs to.

 

Lilou

Ambassador
Ambassador
FOTCM Member
I strongly suspect that when someone donates blood to the Red Cross, they add your DNA to a data base. I live in Michigan, and my very first donation was sent to Richmond, Virginia. No subsequent donations have left the state of Michigan. If they want it, they'll get it one way or another. 😠
 
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