One of several reasons I avoid Google when possible. Have ever since people got so lazy they couldn't say "search for it", they adopted "Google it". They have been well known to be having ulterior motives. The spots haven't been lost have they?

A tidbit of trivia, the name "Google" was a mistake. Yup, the two boys apparently didn't know how to spell googol (which is a number written as a 1 with 100 zeros after it). And now you know the rest of the story.

That's definitely not surprising. Google backs the company because the founder's the wife is the co-founder of 23 and Me. Not sure how it will work though now that they are divorce.

You have to sign a release and give permission, it's not secretive at all. You can also opt in to help with more genetic research, which I chose to do. I'm also an organ donor/ donate body to science so for me I feel like even if their discoveries are for personal gain (not saying that is 100% true) it's still benefits the greater good of society.

I haven't read the linked articles but I will later on. I just wanted to post that you can copy all your analyzed dna and still have access to health information through medical journals as well as other free and paid health sites. There's also a site I came across, sorry don't know the name as it was a US site which doesn't apply to me, it is run by health care professionals. They use the dna in conjunction with traditional practices to give the best quality care.

While 23 and Me offers a health component there are several other sites like Ancestry and National Geographic that do the ancestral component. They all have their own agendas too. Businesses normally do.

It is well known that when you submit your genetic info, they're also collecting it. It has been known, and they tell you upfront. Always have. No big secret? Guess what? Their CEO was at the Precision Medicine Meeting as the follow up to what the President mandated, back February. The participation, comments, thoughts, ideas, etc. of what they're doing with the genetic info is PUBLIC. Feel free to watch.

Precision Medicine Meeting

Further, they want to keep doing what they're doing. They weren't allowed to. That is, they want to get and give information. Not only that, here's a full rebuttal to the smearing of 23andme. Couldn't have said it better myself.

Because this is new territory in the world. How long have providers been collecting DNA and what is being done with it? I can tell you, from the top level of decision makers (straight from their mouths), it's a worldwide issue of how is the information is stored, disseminated, sent across other networks/to other providers...

If you want, I'll send you the link where they were gathered in a room, long before 2013 (which the article is dated. This is old news. Had you not seen it before?), saying as much. The ground is getting paved. Also, did you know there is new legislation, passed quite recently, that change the whole face of it in the US? Talk about "supposed experts" posting snidely... but you stepped into my arena and this is something I truly know about. This is where I hang my hat.

So I had a chance to read all the articles and still stand by what I said earlier that it's not secretive. When I posted my 23 and Me thread back in either late May or Early June I even joked about officially signing my life away.

Some people even share their genetic info freely with everyone they are connected to as a way to find out how they are related.

I know Ancestry.com is slightly different as it's not sharing your genetic makeup, but Ancestry does the same thing. They get people to compile all their data they've collected into a family tree. That family tree is then used by Ancestry to entice more users to buy their service since you cannot access the info unless you have a pricey membership. Most people do choose to keep the info of living people private, but not all do.

That's the thing little. How are we supposed to get enough genetic information to cure diseases, avoid diseases, heck, we even want help when it's our disease!.... without giving anything. It's a conundrum, to say the least.

Every person knows their information is gleaned and kept, when they consent to have their genes analyzed. If not, that company/institution is in violation of the Institutional Review Board (came from the Nuremburg trials), and in risk of huge penalties.

Gaining genetic information is crucial in scientific research and all the safeguards that are set are for the patient, not the group who is researching.

I agree Rob, that's why I consented to being a part of the ongoing medical research. As new studies pop up then I can agree to or opt out of participating. As a separate aside from the privacy issues, if I hadn't done this test I never would have even known that I have the MTHFR C677 mutation. I've already experienced health consequences that have been linked to it and really now that I know, it's such a simple thing that I can do to help prevent more health consequences. That alone was well worth the $ spent.

My youngest brother actually used to make a living being a professional test subject. This way is a whole lot less invasive and risky in my mind, despite at some point some potential privacy issues. Heck, many people use Facebook and that's just full of potential privacy issues.

I too believe so strongly in medical research. I'm enrolled in Research Match (have nothing to do with except, personally). I keep wishing they'd want to do something that involved my incredibly rare disorder, but so far, just control stuff or answer some questionnaires. Some day.

I'm probably a subject in one of the many many many PheWAS and/or GWAS that have gone on, but I don't know! I'm in another, different, de-identified biobank. I wish they could all be de-identified for the subject, but then, if the subject had an undiagnosed illness/disorder, you couldn't tell them.

rob, I know.

I'm the first one to support commercial activity, I spent my career in the private sector. I also have a family member involved in publicly funded medical research.

What I find distasteful are the underhanded tactics and whispered goals that companies like this follow. They're not involved in medical research, they're trying to build an informatics base to exploit commercially in directions unrelated to supplying limited genomic information to individuals. That's fine, they should say so rather than misleading the public.

It's the misrepresentation of what they do and what information is and isn't provided that I think consumers should know more about. And which, by definition, the company is secretive and not very forthright about. Just as with Google and the directory assistance activity which was really for itself and not for users.

But they don't misrepresent what they do. I'll see if I can find it still on the site where they have it all documented. They say flat out that they may share with third parties. It's there, people just have to read the info. If I can find it, I may just have to copy and past, but I'll see if I can link it.

That was exactly my point. You don't know.

No one was being underhanded or whispering goals. I know they provide all of what they do upfront and always have. I've read their materials and I knew what to be looking for. It's very very very obvious.

Keep in mind my page is the Canadian website. This is right on the page under "How it Works" when I am not logged in. Here they let you know that if you do the test an insurance company may request your data, or an employer.

https://www.23andme.com/en-ca/howitworks/

At 23andMe, we believe that individuals should have complete control over their genetic information and how it's shared without the threat of discrimination.

Currently there are no protections for Canadians against discrimination based on their genetics - life insurance companies and employers may request an individual's genetic information or may ask whether an individual has had a genetic test.

Currently, there is Canadian legislation under review (Bill S-201) to protect genetic information. 23andMe fully supports Bill S-201 and will continue to advocate for legislation and other actions that can protect Canadians from discrimination in insurance and employment decisions on the basis of genetic information.

https://www.23andme.com/en-ca/about/privacy/#Full

Here's all the privacy policy where they explain that they have 3rd party partner, even about using cookies.

close enough little. We have GINA to replace your verbiage:

The Genetic Information Nondiscrimination Act (GINA) is U.S. federal legislation that protects Americans from discrimination (in health insurance and employment decisions) on the basis of genetic information. Click here to learn about how GINA protects your genetic privacy.

Rob, ever hear of HeLa cells? To me, what this company is doing is perhaps a present day version of that. Skirting rules and plunging forward.

The data will be collected and analyzed, there's no doubt, and good will come of it. The focus is not to see whether Great Grandpa Igor was really a Tartar wrestler or an Orthodox priest, they should be more forthright about the bait and switch tactics.

I'd like to see the information accumulation done in the public sector, that's all. I have lots of experience in Silicon Valley, this company's tightrope walking privacy incursions and questionable ethical practices aren't common. Their public statements have long been evasive and misleading. That's what motivate my views.

Rob, I just wanted to show that they openly share that sort of info as it is an issue for Canadians. I had to read through all the info before consenting. That is up to me to do. Also long as someone is literate they should be able to know what they are consenting to. If they don't then they didn't read through every detail. It may have been different a few years ago, I don't know as it was just about a month ago that I did mine, but I was fully aware what I was doing when I did my test.

Here's a link to the Terms of Service

excerpt (that has always been there)

12. Material Provided to 23andMe - Your Proprietary Rights

User Content.... You acknowledge and agree that this license includes a right for 23andMe to make such User Content available to other companies, organizations, or individuals with whom 23andMe has relationships, and to use such User Content in connection with the provision of those services.

Snidely, I am not understanding what you mean by "The focus is not to see whether Great Grandpa Igor was really a Tartar wrestler or an Orthodox priest, they should be more forthright about the bait and switch tactics". The ancestry feature is something that they are newly focusing on to draw in more people. There are many people that just want the ancestry feature of it. There are loads of adoptees on my connections that are using it as a way to hopefully find out more about their extended family. The ancestry side of it is not the best out there though. They do have a ways to go on that. You can however take your raw data that 23 and Me has analyzed and use other programs for that purpose.

yes, snidely, I have. You're talking about Henriette (sp?). And I told you how times have changed. No one who does research may get around the IRB. I think you have it out for 23andme for working in uncharted territory. There will have to be a give and take, and they've never skirted anything that I've seen. Go read how they must adhere to IRB standards again. You seem to have skipped it. Read what I've bolded directly above this post. You are skipping it! Since the FDA already shut down a portion of what they were doing, why didn't they shut it all down? Because they didn't do anything wrong! They're just working out the details of the health identifying materials. I may not work in silicon valley, but I work in Research, all day long every day.

Times they do change. And I'll try one more time to educate you, but you won't see it. I'm sure:

"In March 2013, German researchers published the DNA code, or genome, of a strain of HeLa cells without permission from the Lacks family.[40] Later, in August 2013, an agreement by the family and the National Institutes of Health was announced that gave the family some control over access to the cells' DNA code and a promise of acknowledgement in scientific papers. In addition, two family members will join a six-member committee which will regulate access to the code.[40]"

Haha, rob, Page 9 or whatever of the small print. In software, the equivalent is called a EULA (end user license agreement). No one reads them, do you?

This company has long been evasive, circuitous, and
misleading in its public persona. More information allows people to make
informed choices.

It's HEnrietta LAcks . There's a good book (The Immortal Life of) and maybe you've read it. There have been some changes and remedial actions by Johns Hopkins and others as a result of the publicity for the story exposed by the book. Author Rebecca Skloot has become a one person advocate and crusader for the family. She's been criticized (in literary circles) for getting too close to the subject, perhaps losing objectivity.

I don't work in research, as I said, a family member does. I know there are loads of controls, rules, oversight, red tape, ethical guidelines, etc., some needed, some not, most well intended. I think I've expressed my view, nothing more to say.

haha, nothing. When someone is having their personal DNA tested (like little did, and knew they told you up front about what they keep), do you think that they are as flippant about it as you're being? Not on your life. And yes, I did read it. Even though I wasn't being tested. Duh.

I know all about how medical research has been set up and the whys. Do you know about all the wrong things that have happened all over the world that changed how medicine is done? And all the good that has come out of it? Why are you grilling me? I knew her name off the top of my head! Are you just angry because I know a million times more about it than you? Could be.

I have a family member, my immediate, that was in the military. Does that mean I know what it was like to serve in Nam?

I think I'm just talking to myself in this conversation. :)

Oh, the company hasn't been evasive. You're making that up. I've told you they were upfront, and they are. I'm not sure how you came to that conclusion. Maybe that's why they divorced. She didn't like how Google was run.

No, you're doing great little. snidely is focused on getting me to agree with his agenda.

I had my DNA tested with 23andme because of the Parkinson's Disease study. I have the disease and if there is a way of finding a cure, including giving them my DNA information, I am more than willing to do so. "Better to light a single candle than to curse the darkness."

As of Feb2013. "We’re excited to announce that the 23andMe Parkinson’s Research Community has exceeded its goal, enrolling more than 10,000 people with the disease and creating the largest cohort of genotyped people with Parkinson’s in the world.

Reaching this milestone offers scientists an incredible opportunity to better understand the causes and potential treatments for this neurodegenerative disease. While we’ve already done important Parkinson’s research, it is what we hope to do in the future that is most exciting for researchers here at 23andMe."
Read more at 23andMe Reaches Parkinson’s Research Goal

More haha, you've provoked me. Just a little. They're not flippant, they're evasive.

I'm not angry at all. Here's what you WON'T find on their website

"We are a start-up bioinformatics company. Our goal is to accumulate enough genomic information from unique individuals so that that information can be sold as a product to researchers to provide data and insights useful for numerous types of biomedical research in this new and developing field.

In return for your providing your information to us, we will provide an analysis back to you that as of today may only provide limited or perhaps even no useful information. Some of the interpretations we provide could turn out to be incorrect. As genomic understanding and investigations proceed, the information you receive from us could later become more useful. Supplying this information to you is all we owe you, you grant us a perpetual right to use your information and you understand you have no financial interest in any future income producing use we have for it."

Take a look at their website, tell me what you find. I've been in town with them, it took time for the real story to get out. As with the Google example I started with at the top.

I can tell you about my family member. I have frequent in-depth discussions concerning ongoing work and circumstances encountered internally and externally. Seems like it's been at least monthly (on this topic only) for years. I've visited all research facilities involved and met and spoken with colleagues. Where does all that get me? I know a fair amount for someone who knows nothing. And a lot more than someone with no exposure to the field. I have impressions and insights from perhaps a few handfuls of people. If you're a researcher, I'll immediately defer to you about research. But not about this company's conduct.

If you'd had many long discussions with your Vietnam serving relative and others, the same could be said for you on that topic. Nothing more or less.

Thank you too (along with little) caflowerluver! We need more like you in this world to further a cause, that we ourselves, hope to benefit from (barring that, helping others)

caflowerluver

I had my DNA tested with 23andme because of the Parkinson's Disease study. I have the disease and if there is a way of finding a cure, including giving them my DNA information, I am more than willing to do so. "Better to light a single candle than to curse the darkness."

P.S. 23andme IS research. duh!

You're naive.

The work is being done by Genentech. I believe this is a product revenue announcement for 23andme, access to its genomic database is licensed for $$$. The announcement is no different than if IBM had sold a supercomputer to NASA. Difference would be, IBM would have produced the product it sold. In this case, 23 gets paid to take it and then gets paid to sell it.

There are a number of bioinformatic companies, their business product is information and users pay to use it.

Who are you talking to that is naïve?

Does it matter if there is a middle man? Why yes it does in the world of genetics! There was a discussion of the new legislation I mentioned above and I think the words, "data dump", "analysts", and "genetic counselors" came up in the discussion. Your naivety is showing, snidely.

It's one thing to have the test run, and a far cry from understanding them.

Snidely is 100% correct. All the company does is data mining.
I wouldn't believe much of what they told me about my DNA.

golfegrrl, no snidely is 100% incorrect. As several of us have posted, it's all out in the open. Of course they are data mining, what company isn't these days? Snidley's trying to say they are being secretive about it and that just isn't true. I will re-iterate again, as someone who has actually used their product and read all the info myself before consenting, I was well aware of their policy. As for believing what they tell you about your DNA, they don't tell you all that much other than raw data. If your implying they are going to just put in any old results that is utter nonsense. They are regulated just like any other genetic testing company and have strict protocol they must follow.

I'm not suggestion the test is for everyone, but to try and use scare tactics when there's nothing being shielded from anyone is ridiculous.