Update: May 25, 2018 – Please note that with the advent of the GDPR legislation in Europe, this article is no longer current. Please read each company’s current statements about privacy and terms of service to understand their policies.
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Are you aware that when you purchase a DNA kit for genealogy testing through either 23andMe or Ancestry that you are literally giving these companies carte blanche to your DNA, the rights to your DNA information, including for medical utilization meaning sales to Big Pharm, and there is absolutely no opt-out, meaning they can in essence do anything they want with your anonymized data?
Both companies also have a higher research participation level that you can choose to participate in, or opt out of, that grants them permission to sell or otherwise utilize your non-anonymized data, meaning your identity is attached to that information.
However, opting out of his higher level DOES NOT stop the company from utilizing, sharing or selling your anonymized DNA and data. Anonymized data means your identity and what they consider identifying information has been removed.
Many people think that if you opt-out, your DNA and data is never shared or sold, but according to 23andMe and Ancestry’s own documentation, that’s not true. Opt-out is not truly opt-out. It’s only opting out of them sharing your non-anonymized data – meaning just the higher level of participation only. They still share your anonymized data in aggregated fashion.
Some people are fine with this. Some aren’t. Many people don’t really understand the situation. I didn’t initially. I’m very uncomfortable with this situation, and here’s why.
First, let me say very clearly that I’m not opposed to WHAT either 23andMe or Ancestry is doing, I’m very concerned with HOW, meaning their methodology for obtaining consent.
I feel like a consumer should receive what they pay for and not have their DNA data co-opted, often without their knowledge, explicit permission or full situational understanding, for other purposes.
There should also be no coercion involved – meaning the customer should not be required to participate in medical research as a condition of obtaining a genealogy test. Most people have no idea this is happening. I certainly didn’t.
How could a consumer not know, you ask?
Because these companies don’t make their policies and intentions clear. Their language, in multiple documents that refer back and forth to each other, is extremely confusing.
Neither company explains what they are going to (or can) do with your DNA in plain English, before the end of the purchase process, so that the customer clearly understands what they are doing (or authorizing) IN ADDITION to what they intended to do. Obtaining customer permission in this fashion is hardly “informed consent” which is a prerequisite for a subject’s participation in research.
The University of Southern California has prepared this document describing the different aspects of informed consent for research. If you read this document, then look at the consent, privacy and terms and conditions documents of both Ancestry and 23andMe, you will notice significant differences.
While 23andMe has clearly been affiliated with the medical community for some time, Ancestry historically has not and there is absolutely no reason for an Ancestry customer to suspect that Ancestry is doing something else with their DNA. After all, Ancestry is a genealogy company, not a medical genetics company. Aren’t they???
Let’s look at each of these two companies Individually.
23andMe
At 23andMe, when you purchase a kit, you see the following final purchase screen.
On the very last review page, after the “order total” is the tiny “I accept the terms of service” checkbox, just above the large grey “submit order” box. That’s the first and only time this box appears. By this time, the consumer has already made their purchase decision, has already entered their credit card number and is simply doing a final review and approval.
In the 23andMe Terms of Service, we find this:
Waiver of Property Rights: You understand that by providing any sample, having your Genetic Information processed, accessing your Genetic Information, or providing Self-Reported Information, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners. You specifically understand that you will not receive compensation for any research or commercial products that include or result from your Genetic Information or Self-Reported Information.
You understand that you should not expect any financial benefit from 23andMe as a result of having your Genetic Information processed; made available to you; or, as provided in our Privacy Statement and Terms of Service, shared with or included in Aggregated Genetic and Self-Reported Information shared with research partners, including commercial partners.
Clicking on the privacy policy showed me the following information in their privacy highlights document:
- We may share anonymized and aggregate information with third parties; anonymized and aggregate information is any information that has been stripped of your name and contact information and aggregated with information of others or anonymized so that you cannot reasonably be identified as an individual.
In their full Privacy statement, we find this:
By using our Services, you agree to all of the policies and procedures described in the foregoing documents.
Under the Withdrawing Consent paragraph:
If you withdraw your consent for research your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services (as described in Section 4.a), and shared as Aggregate Information that does not identify you as an individual (as described in Section 4.d).
And in their “What Happens if you do NOT consent to 23andMe Research” section:
If you do not complete a Consent Document or any additional consent agreement with 23andMe, your information will not be used for 23andMe Research. However, your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services (as described in Section 4.a), and shared as Aggregate or Anonymous Information that does not reasonably identify you as an individual (as described in Section 4.d).
If you don’t like these terms, here’s what you can do about it:
If you want to terminate your legal agreement with 23andMe, you may do so by notifying 23andMe at any time in writing, which will entail closing your accounts for all of the Services that you use.
You can read the 23andMe full privacy statement here.
You can read the 23andMe Terms of Service here.
You can read the Consent document here.
Ancestry
Ancestry recently jumped into the medical research arena, forming an alliance with Calico to provide them with DNA information – that would be Ancestry’s customer DNA information – meaning your DNA if you’re an AncestryDNA customer. You can read about this here, here and here.
When you purchase an AncestryDNA kit, you are asked the following, also at the very end of the purchase process. If you don’t click, you receive an error message, shown below.
Here are the Ancestry Terms and Conditions.
Here is the Ancestry Privacy Statement.
From Ancestry’s Terms and Conditions, here’s what you are authorizing:
By submitting DNA to AncestryDNA, you grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered. You hereby release AncestryDNA from any and all claims, liens, demands, actions or suits in connection with the DNA sample, the test or results thereof, including, without limitation, errors, omissions, claims for defamation, invasion of privacy, right of publicity, emotional distress or economic loss. This license continues even if you stop using the Website or the Service.
From their Privacy Statement, here’s what Ancestry says they are doing with your DNA:
vi) To perform research: AncestryDNA will internally analyze Users’ results to make discoveries in the study of genealogy, anthropology, evolution, languages, cultures, medicine, and other topics.
The is no complete opt-out at Ancestry either.
Now What?
So, how many of you read the Terms and Conditions and Privacy Statements at either 23andMe or Ancestry and understood that you were in essence giving them carte blanche with your anonymized data when you purchased your tests from them?
Is this what you intended to do?
How many of you understood that the ONLY way to obtain your genealogy information, ethnicity and matching is to grant 23andMe and Ancestry authorization to use your DNA for other purposes?
How many of you understood you could never entirely opt-out?
Where is your DNA?
Who has it?
What are they doing with it?
How much did or will Ancestry or 23andMe, or Big Pharm make from it?
Why would they want to obtain your DNA in this manner, instead of being entirely transparent and forthright and obtaining a typical informed consent?
Are they or their partners utilizing your DNA to design high end drugs and services that you as a consumer will never be able to afford?
Are they using your DNA to design gene manipulation techniques that you might personally be opposed to?
Do you care?
Personally, I was done participating in research when 23andMe patented their Designer Baby technology, and I’ve never changed my mind since. There is a vast difference between research to cure Parkinson’s and cancer and focusing your research efforts on creating designer children.
People who do want medical information (such as from 23andMe) should be allowed to receive that, personally, for their own use – but no one’s DNA should be co-opted for something other than what they had intended when they made the purchase without a very explicit, separate, opt-in for any other usage of their DNA, including anonymized data.
Period.
People who purchase these services for genealogy information shouldn’t have to worry about their DNA being utilized for anything else if that’s not their specific and direct choice.
I shouldn’t have to opt-out of something I didn’t want and didn’t know I was signing up for in the first place – a type of usage that wouldn’t be something one would normally expect when purchasing a genealogy product. Furthermore, if I opt out, I should be able to opt out entirely. You only discover opt-out isn’t truly opt-out by reading lots of fine print, or asking an attorney. And yes, I still had to ask an attorney, to be certain, even after reading all the fine print.
Why did I ask a legal expert? Because I was just sure I was wrong – that I was missing something in the confusing spaghetti verbiage. I couldn’t believe these companies could actually do this. I couldn’t believe I had been that naïve and gullible, or didn’t read thoroughly enough. Well, guess what – I was naïve and gullible and the companies can and do utilize our DNA in this manner.
Besides that, “everyone knows” that companies can’t just do what they want with your DNA without an informed consent. Right? Anyone dealing with medicine knows that – and it’s widely believed within the genetic genealogy community. And it’s wrong.
It seems that 23andMe and Ancestry have borrowed a page from the side of medical research where “discarded” tissues are used routinely for research without informed consent of the person from whom they originated. This article in the New York Times details the practice, an excerpt given below:
Tissues from millions of Americans are used in research without their knowledge. These “clinical biospecimens” are leftovers from blood tests, biopsies and surgeries. If your identity is removed, scientists don’t have to ask your permission to use them. How people feel about this varies depending on everything from their relationship to their DNA to how they define life and death. Many bioethicists aren’t bothered by the research being done with those samples — without it we wouldn’t have some of our most important medical advances. What concerns them is that people don’t know they’re participating, or have a choice. This may be about to change.
Change is Needed
The 23andMe and Ancestry process of consent needs to change too.
I would feel a lot better about the 23andMe and Ancestry practices if both companies simply said, before purchase, in plain transparent normal-human-without-a-law-degree understandable language, the following type of statement:
“If you purchase this product, you cannot opt out of research and we will sell or utilize your anonymized results, including any information submitted to us (trees, surveys, etc.) for unspecified medical and pharmaceutical research of our choosing from which we and our partners intend to profit financially.”
If I am wrong and there is a way to opt out of research entirely, including anonymized aggregated data, while still retaining all of the genealogy services paid for from the vendor, I’ll be more than happy to publish that verbiage and clarification.
Today, the details are buried in layers of verbiage and the bottom-line meaning certainly is not clear. And it’s very easy to just “click through” because you have no choice if you want to order the test for your genealogy. You cannot place an order without agreeing and clicking the box.
This less-than-forthright technique of obtaining “consent” may be legal, and it’s certainly effective for the companies, guaranteeing them 100% participation, but it just isn’t morally or ethically right.
Shame on us, the consumers, for not reading the fine print, assuming everyone could understand it.
But shame on both companies for burying that verbiage and taking advantage of the genealogists’ zeal, knowing full well, under the current setup, we must authorize, without fully informed consent, their use of our DNA in order to test in their systems to obtain our genealogy information. They know full well that people will simply click through without understanding the fine print, which is why the “I accept” box is positioned where it is in the sales process, and the companies are likely depending on that “click through” behavior.
Shame on them for being less than forthright, providing no entire opt-out, or better yet, requiring a fully informed-consent intentional opt-in.
Furthermore, these two large companies are likely only the tip of the iceberg – leading the charge as it were. I don’t know of any other DNA testing companies that are selling your DNA data today – at least not yet. And just because I don’t know about it doesn’t mean it isn’t happening.
Other Companies
Family Tree DNA, the third of the three big autosomal DNA testing companies, has not and is not participating in selling or otherwise providing customer DNA or data for medical or third party research or utilization. I confirmed this with the owners, this week.
Surely, if Ancestry and 23andMe continue to get away with this less than forthright technique, more companies will follow suit. It’s clearly very profitable.
Today, DNA.Land, a new site, offers genetic genealogists “value” in exchange for the use of their DNA data. However, DNA.Land is not charging the consumer for testing services nor obtaining consent in a surreptitious way. They do utilize your DNA, but that is the entire purpose of this organization. (This is not an endorsement of their organization or services – just a comment.)
GedMatch, a third party site utilized heavily by genetic genealogists states their data sharing or selling policy clearly.
It is our policy to never provide your genealogy, DNA information, or email address to 3rd parties, except as noted above.
They further state:
We may use your data in our own research, to develop or improve applications.
Using data internally for application improvement for the intended use of the test is fully legitimate, can and should be expected of every vendor.
Bottom line – before you participate in DNA testing or usage of a third party site, read the fine print fully and understand that no matter how a vendor tries, your DNA can never be fully anonymized.
Call to Action
I would call on both 23andMe and Ancestry to make what they are doing, and intend to do, with their customers DNA much more transparent. Consumers have the right to clearly know before they purchase the product if they are required to sign an authorization such as this and what it actually means to them.
Furthermore, I would call on both companies to implement a plan whereby our DNA can never be used for anything other than to deliver to us, the consumers, the product(s) and services for which we’ve paid unless we sign, separately, and without coercion, a fully informed consent opt-in waiver that explains very specifically and clearly what will occur with our DNA.
These companies clearly don’t want to do this, because it would likely reduce their participation rate dramatically – from 100% today for anonymized aggregated data, because there is no opt-out at that level, to a rate significantly lower.
I’m reminded of when my children were teenagers. One of them took the car someplace they knew they didn’t have permission to go. I asked them why they didn’t ask permission first, and they rolled their eyes, looked at me like I was entirely stupid and said, “Because you would have said no. At least I got to go this way.” Yes, car privileges were removed and they were grounded.
Currently 23andMe reports an amazing 85-90% participation rate, which has to reflect their higher non-anonymized level of participation because their participation rate in the anonymized aggregated level is 100%, because it’s mandatory. Their “consent” techniques have come under question by others in the field as well, according to this article. Many people who do consent believe their participation is altruistic, meaning that only nonprofit organizations like the Michael J. Fox Foundation will benefit, not realizing the full scope of how their DNA data can be utilized. That’s what I initially thought at 23andMe. Did I ever feel stupid, and duped, when that designer baby patent was issued.
Lastly, I would call on both companies to obtain a fully informed consent for every person in their system today who has already purchased their product, and to discontinue using any of the data in any way for anyone who does not sign that fully informed consent. This includes internal use (aside from product improvement), not just third party data sharing or sales, given that 23andMe is planning on developing their own drugs.
If you support this call to action, let both companies know. Furthermore, vote with your money and consumer voice. I will be making sure that anyone who asks about testing firms is fully aware of this issue. You can do the same thing by linking to this article.
Call them:
23andMe – 1-800-239-5230
Ancestry – 1-800-401-3193 or 1-800-262-3787 in the US. For other locations click here
Write them:
23andMe – customercare@23andme.com
Ancestry – Memberservices@ancestrydna.com
I genuinely hope these vendors make this change, and soon.
For additional information, Judy Russell and I have both written about this topic recently:
And Now Ancestry Health
http://dna-explained.com/2015/06/06/and-now-ancestry-health/
Opting Out
http://legalgenealogist.com/blog/2015/07/26/opting-out/
Ancestry Terms of Use Updated
http://legalgenealogist.com/blog/2015/07/07/ancestry-terms-of-use-updated/
AncestryDNA Doings
http://legalgenealogist.com/blog/2015/07/05/ancestrydna-doings/
Heads Up About the 23andMe Meltdown
http://dna-explained.com/2015/12/04/heads-up-about-the-23andme-meltdown/
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Disclosure
I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.
Thank you so much.
DNA Purchases and Free Transfers
- Family Tree DNA
- MyHeritage DNA only
- MyHeritage DNA plus Health
- MyHeritage FREE DNA file upload
- AncestryDNA
- 23andMe Ancestry
- 23andMe Ancestry Plus Health
- LivingDNA
Genealogy Services
Genealogy Research
- Legacy Tree Genealogists for genealogy research
I really don’t care what either 23andme or ancestryDNA does with my DNA. But I hope that not many people see this page,take it the wrong way, and spread misinformation about the tests that would discourage other people from doing it. Because if that happened, we probably wouldn’t see additional (and potentially closely related) matches, and the companies wouldn’t be compelled to improve their service for the other features like the ethnicity part.
The truth is the truth and if people are deterred when they see how their DNA is going to be utilized, then so be it. I can’t in good conscience recommend either of these companies without mentioning that, given that I have knowledge and the companies don’t make it clear. If they change the consent process, then it’s no longer a problem.
AMEN
It’s Christmas again, and time for unique gifts…DNA test comes to mind since so many of us are curious about our genealogy. I just read your article, and I, for one, DO NOT want my private info available to anyone for research, or otherwise. Thank you for the info and related sources. Yes, my bubble is burst knowing about this, but one cannot just be complacent about such matters. I cannot give such a gift knowing it could violate ones privacy. But I will research further, and am still optimistic about learning more about my heritage.
Family Tree DNA sells the autosomal DNA test under the name Family Finder and they do not sell your DNA.
Pretty certain the ancestry portion is a “clickbait.” A way to collect data. They are not making money off the ancestry/genealogy portion, only the consumer paying for the feature. They make money selling the data to pharma and research. The ancestry/genealogy is a way of harvesting the data.
That makes sense from a business perspective. However, if Family Tree DNA does not sell its customer’s DNA, then why is Ancestry’s test more expensive?
Because they can perhaps?
I really DO care what these companies do with my data. Who do they on-sell to? Do they have a vetting process for the buyer (not likely) or do they sell to anyone who can afford to pay…. Neo-NAZIs, KKK, or some other “supremists” looking for a discrete and virtually untracable way to locate targets? Because, who is going to link a bunch of random attacks to a DNA database?
Maybe it will be Monsanto or some other bully-corporate who are attempting to take full control of, in this instance, the food chain. Are you aware that Monsanto attempted to have home grown crops banned in Europe? How crazy is that. Actually, that’s very indicative of psychopathy. Luckily now, they are being banned in a lot of countries. But would that stop a psychopath hell-bent on world domination of an industry? Not likely. Crop modification is gene modification, and if they can modify crops, why not modify the human DNA to become affected in some way to non-Monsanto crops?
I CARE AND I DON’T WANT MY DNA INFORMATION SOLD TO THE HIGHEST BIDDER,ANONYMITY OR NOT. BIOLOGICAL WEAPONS DON’T ALWAYS WORK DUE TO GENETIC VARIATION. THINK! WHAT IF THE DATA ENDS UP IN THE HANDS OF PRODUCERS OF BIOWEAPONS??? GENOCIDE? POPULATION CONTROL? INVENTION OF NEW SICKNESS? ETHNIC WIPE OUT?
Are you saying that FTDNA is explicitly saying in their terms and conditions that they will never use our DNA for anything else than matching?
I’m pretty sure it’s not. Gedmatch states this yes, as they are a hobby run by two guys with regular 9-5 jobs (as written to me by one of the owners).
Ancestry didn’t start like this, but yet they can use DNA that was given to them years ago. FTDNA can do the same. If they ever need the money or are bought over.
Don’t just put them as the holy exception, they are s commercial company like the other two.
What I said what that 23andMe and Ancestry are doing this today and they need to change their consenting process so that it’s an informed consent.
Thanks for this article! Terri Viola
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For me Roberta the ballot is still out on DNALand, so my data won’t be going there at least until a LOT more info on that is out there. Gedmatch I’m totally comfortable with as it was designed by genealogists’ for genealogists and is very straightforward. Ancestry has never been honest a day since the company’s inception, so who knows what they are really doing behind the scenes!? They have a way of getting away with doing whatever they want as they continue to pour tons of $$ into advertising drawing in more unsuspecting new genealogists to their site in general. FTDNA needs to return to it’s customer based focus and add the tools and improvements folks, like yourself, have been requesting for years now. IF gedmatch can, so can FTDNA, otherwise you’re still just testing somewhere-at the company with the least chance for returning cutomers with erroneous data ultimately and uploading it to gedmatch. Maybe we need to get the gedmatch guys into selling tests too! LOL
I finally gave in an ordered the AncestryDNA test just a few months ago and also tested my cousin trying to help define one match with a Roberts man (Roberts is his surname) who is proven to not only be a 67 marker exact match but now to be 111 Y-DNA match to him and the man tested his autosomal only with Ancestry. We both match him and I am presently working on matches in-common to try to define something closer on their match so that we can narrow down the true paternity of my cousin’s grandfather and my great-grandfather. Now I wish I had never done the test or subjected my cousin to his atrocity.
And it only adds now to the firestorm already started from all their FamilyTreeMaker software users who are being dumped just like they did their Y-DNA and mtDNA and also forced a childish and almost unbearable NEW ANCESTRY on everyone.
Roberta, is there some way to get this on the news media? That is probably the only thing the Ancestry high mucky-mucks will ever pay attention to as they sure have not paid attention to the thousands and thousands of customers who have bombarded them already with emails and replies to their news blogs.
Thank you so much for sharing this news and be assured I will be spreading the word!
I have tested at all three big companies and if they want to use my dna for a positive reason that could help someone or something now or in the future, I am happy to share. I do not consider it an invasion of my privacy in any manner.
what if they sold it to an insurance company that then raised your premium, or refused coverage for a “preexisting condition” due to some portion of your DNA being identified as a possible trigger for a genetic disease?
I think the reader who does “not consider this an invasion of my privacy in any manner” needs to learn a bit more about genetics. I recommend reading the book called “The Gene,” by Dr. Siddhartha Mukherjee, a Pulitzer Prize-winning, bestselling author of The Emperor of All Maladies. Especially the last chapters.
How do they compare to Family Tree DNA?
As I mentioned in the article, Family Tree DNA does not sell you DNA or information.
Roberta, I noticed the wording that I assume was presented to you by Family Tree DNA: That FTDNA “has not and is not participating in selling or otherwise providing customer DNA or data for medical or third party research or utilization.” It seems what they did not say, is that they WILL NOT do it. To me, what they did say isn’t as important as what they did not say.
I’ve tested at all three companies, so that genie is already out of the bottle. I don’t delude myself that Family Tree DNA will not jump on that revenue-generating bandwagon.
Let’s take all the blinders off. Ancestry built its entire business model on the deceptive practice of defrauding genealogists and family historians into uploading their research and genealogy to Ancestry, which Ancestry then turned around and sold as a commercial enterprise, without any compensation whatsoever to the researchers and family historians who compiled the information. This deceptive practice should have served as fair warning to anyone participating in Ancestry DNA data collection.
The broader problem is that no DNA analysis service in America will guarantee that they will not sell the information collected from the services paid for by a customer. At least to date, I have not found one willing to provide absolute confidentiality.
Recognizing this as far back as 2002 when our family began conducting it’s own DNA study, we employed our DNA services from a company residing in England. .Unlike capitalist America, where everything about you is fair game for commercial exploitation, England’s DNA policies respect and protect the rights of the individual test participant. Surrendering convenience, the cost was greater and the time more lengthy. But the peace of mind that one’s DNA and identity would never be exploited was worth the trouble.
This is how they bring people in. Sell ancestry and genealogy. I agree with your sentiments.
I understand from this article that both companies possibly share DNA based on aggregate and anonymous data… at least at the moment… and that FTDNA and Gedmatch do not. I understood that when I ordered the testing for myself and for members of my family and that is what I told them. Did I understand that correctly? I hope so and in that is the case, I agree with Caith above. If my DNA can help anyone else I’m all for it. My concerns are the same as Roberta’s. Most people do not pay attention to the “fine print” and the companies working in such an underhanded way is disappointing. Kudos to FTDNA and Gedmatch.
Yes, that’s accurate.
This is partly why I think that the doubling of the test price at 23&Me is so outrageous. They claim that they had to raise the price to cover the FDA cost. Well, when I subscribed it was $99 and included the Health information. I don’t recall them lowering the price when the FDA made them stop providing the Health data. The main focus at 23&Me, as I understand it, is Health research. Every time you login you can participate in the questions regarding that research. Both your DNA results and your answers to the questions further their research. I feel that when we buy a DNA test, we are contributing bot money and DNA to that research. Now they want us to pay twice as much so that they can continue to do that research. I am not so certain about Ancestry’s use of the DNA beyond Profit but I do understand, in both cases, that “Opt Out” does not really mean what it sounds like. I do believe that both copanies and any other should be more clear about what we are paying for and what they are doing with the results beyond supplying the information to those who pay for the tests. It has always been of some concern to me as I believe that the tests are really overpriced. It is especially expensive at Ancestry if you want to subscribe to their databases as well. This will be an ongoing issue for some time for me and many others as I cannot see the tests getting less expensive though maybe one day the tests will provide better results. Who knows what they will charge then?
I was one of the first people to sign up for DNA analysis with 23andme in 2007. Before I retired, I was a molecular biologist studying molecular mechanisms of cancer. I did SNP analysis like the methods of 23andme, but I was lucky if I could obtain 20-30 samples to try to make any statistical correlations of cause and effect. You can imagine that I was very excited and hopeful about the potential of being able to use thousands or potentially millions of human DNA samples for medical research. I think 23andme made it pretty clear that they were interested in pursuing use of the DNA samples we provided for both altruistic and financial gain. As the price of the analysis went down from $1000 to about $100, I was aware that they were looking to sell the data. I will be very excited if some medical breakthroughs come from their research (they did get at least one NIH grant) or by partnering with other companies and selling the data.
I cannot believe that these two Companies can and are using peoples DNA.This is a terrible injustice to all who had their DNA taken by 23&Me AND Ancestry.
I am so glad that I chose FTDNA where we know that we are safe?
here are some other labs that run dna testing, who have the same sort of paragraph in their consent forms. Vancouver general hospital lab, Calgary childrens lab, orchid cellmark,. LabCorp, maxim analytic,, and so on and so on. if that paragraph is in the consent form, then no matter what the testing ordered is seemingly for, it is now the claimed property of the lab, and they share, sell, alter, etc with whomever they wish and for whatever purpose, THEY WISH. not you. and despite any claims of privacy etc. that paragraph giving them ownership is the only one they follow.
This is amusing- not, but I knew it. I read the fine lines. I am suspicious type. But I had a cousin that was anxious for me to try it, to expand my range and useage outside of FTDNA. I don’t like ancestry.com, but they do provide what I need–records withouth travel. I don’t want to contribute to them at all. But there are things that I want to find out before the body quits. Don’t know if I can do it, but sure trying. Two more cousins that I had tried to get to test at FTDNA, even offered to pay for it, finally bit the bullet. They tested at ANCESTRY. If I want to see how that turns out, I do ANCESTRY. Of course I can’t really examine what makes them match that well.
My results from Ancestry yesterday was interesting. I am working on a tree that I will publish, with enough info but not all. I do want to talk to my matches after all. But my first results at ancestry were 5 matches compared to about 80 at FTDNA at first. Seems like they want more clues, to feed me more info to get more info to sell. I am disgusted. But– you choose your battles.
Joyce
The funny thing is there was no informed consent about DNA being used for medicine when I first did my DNA test at Ancestry. But then one day a new policy came out and I had to agree to it or they wouldn’t let me look at my DNA page. Ancestry is definitely underhanded. I had no idea 23andme was the same way. I had already been planning on leaving Ancestry, deleting my trees and everything, since they decided to get rid of FTM and also when they switched to the New Ancestry it crashes all the time, I get irrelevant search results and matches. The New Ancestry has just been a nightmare. I do plan on going over to MyHeritage though, would I need to get a 23andme DNA test if I want DNA linked to my tree when I move to Myheritage?
Thanks for the article though, just confirms what I already thought of Ancestry.
I don’t know the answer to your question about MyHeritage and the 23andMe test. I don’t use My Heritage.
Transfer your AncestryDNA results to FTDNA …. go to this link and you can do it for free to get the first 20 matches but you want the whole thing so when you get the option to unlock all matches, pay the fee of $39 to get it fully transferred. At least with FTDNA you will get their full name and email addresses of your matches and you can contact them directly. At the link you will see that all you agree to terms of service is to allow FTDNA to make your DNA available to your genetic matches (and that is exactly what you want to do in the first place). I have an account at MyHeritage also but I do not like their setup especially how you view pedigrees. http://dna-explained.com/2014/10/19/family-tree-dna-announces-free-autosomal-transfer-from-23andme-and-ancestry/
Oh yeah I have YDNA111, MTDNA Full and Autosomal DNA at FTDNA. I was just curious if you could only link DNA to MyHeritage thought only 23andme or if I could do it through FTDNA as well. I saw that MyHeritage and FTDNA are partners. And also on FTDNA there is a link for a 50% off 1 year subscription for a MyHeritage Family Tree Plus and Data subscription for only $125.37. Figured I would jump on that deal. Just gotta get off of Ancestry since they are focusing less on Genealogy and more on health lately. I know MyHeritage is just another business, but atleast they seem to be focusing more on Genealogy and expanding tools for genealogy.
And, also transfer your results to GEDmatch. The basics are free. Here you have matches from FTDNA, 23 and Ancestry. This is the ONLY site where you can do a one-to-one comparison to determine if all triangulated matches also match each other. This is a requirement for segment matching.
Please correct me if I am wrong, Roberta.
If you want an easier way to view FtDna trees, use the Chrome browser and add the extension called DNArboretum which will let you select a person in someone’s tree and view their ahnentafel.
Yes I agree that the companies should be straight forward about what they do with the dna results. As a retired nurse I do believe there are benefits to sharing health information and whatever they can discover that may help future generations. If the information provided through my dna remains anonymous then I have no problems with it. I would like to know what exactly is being done with it and how it is being used. Maybe if we knew more people would be volunteering to do dna to help others but then depending on how much they are getting paid for our dna maybe we should not have to pay to supply it.
as a nurse then you realize there is no anonymity in dna profiles. they can take out your name etc, but it is still perfectly possible to identify you by your profile alone, and it is also possible now for them to alter your profile.
Under what circumstances would they want to alter our profile. For what benefit, or whose benefit?
I don’t like the underhandness of it why not be up front with it ,your hiding something?
Something’s awfully wrong with this picture: Ancestry wants to disseminate their customers’ DNA data to third parties, but they adamantly refuse to help the customers share with each other.
Hmmm, appears to be money in one and not in the other.
I say for years company have been doing that not just these companies. what is the problem? I am just trying to find my family so I have no choose but to use them
If you tested on Ancestry, and then remove your DNA , does Ancestry retain the part they are using in their “research sales” database?
I don’t know.
It is particularly disheartening to those of us who are adoptees and have been on the paper trail for years and years with no luck……..then DNA comes along and we discover there are strings attached to this kind of search as well….
Thank you for sharing. This is something I have suspected but have not had the time or skills to track down and prove. Since I have already “committed” to FT DNA, I was not too worried about the “other guys” but I know some of my friends should be worried.
So glad my family members have used ftdna for their tests. Their is no measure of trust with these other two!
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I wanted to say that Ancestry has help me find family that I never knew and I have nothing bad to say about them. I called and ask about what I was reading. I was told that is not true.
Read their verbiage for yourself. Ask your own attorney if you have concerns. I would be glad to print a clarification or correction of Ancestry wants to provide me with a correction or even of they want to make positive changes. I stated that in the article for both Ancestry and 23andMe and that offer stands.
Of course they are going to tell you it’s not true. They don’t want to lose more customers especially since the who Family Tree Maker and New Ancestry Site fiasco’s going on right now. They are already going to lose a lot of customers over that, should more people learn of what they do with out DNA they would probably lose even more customers and potential customers.
They want lost me because I have been help by this site
I had genuinely believed that unless you OPT IN ,they cannot do anything with your information.
They need to gain INFORMED consent, not merely slip by a electronic check box that hides what they are really up to. This seems due for some litigation.
I’m HAPPY to share my genetic information if it means it’ll be used for research. You people are way too paranoid.
no, you are setting terms on how it may be used by saying it will be used for research,. but they own it, and they decide how it will be used. not you. and it is your genetic code. how about it showing up accidentally at a crime scene, how about insurance companies using it to decide if you get insurance or not, etc etc. it can be used however THEY choose. not you. think for once
If you want to play the paranoid role, that fine, but have you thought about what you said for a second? How is raw data from your DNA test going to show up at a crime scene?
Seriously, what is the possibility that a rapist can rape a woman and leave his semen in or on her, and the police or the rapist or anyone else can go to FTDNA, ancestryDNA, 23andme, etc. take your DNA and plant your DNA in the rapist’s semen??? Seriously.
Or a killer’s blood?
Come on, now.
Oh, yeah, then there’s the fact that the type of DNA markers that the authorities look at, CODIS markers, are *NOT* the same kind of DNA markers that the genomics companies look at, SNPs.
THEN there’s the fact that when you do a forensic identity test or a paternity test, there is something called a “chain of custody” where they have you photographed and fingerprinted *so they can make sure that it IS in fact YOU who is submitting the sample*
If anyone would really have anything to worry about then it would be someone who actually did a standard court ordered paternity test or gave DNA for the cops.
*ANYONE* can put any name on a test for a genomics company and who would know whether or not that the name on the sample account is actually the person who did the test?
“how about insurance companies using it to decide if you get insurance or not” Again, how would they be able to do that when there is no chain of custody, which means that there is no hard proof that it was you who did the test? Like I said, you can put your name on the account that the sample is registered to, but who’s going to know that it was actually you who did the sample?
Don’t let your conspiracy theories get the better of you. If you don’t want to participate then that’s fine, but if you do choose to help contribute to advancing research, that’s really cool.
I do not have the time nor the interest to educate you. pull up tarnish on the gold, dna fraud. read, and keep reading, research and then speak. until then, your stupid.
Well they could just pull up your DNA results and say that it was from the DNA at the crime scene.
One thing I think you are missing is that when companies sell your genetic data they are doing it in an underhanded way. It truly is not “Informed Consent” if you have to look through several documents and have a lawyer to interpret those documents. You add onto that that you Pay those companies for a service but if you do not check mark those boxes agreeing to all the documents you do not get your results. Not to mention if you already send in the test, they test it and you disagree with the informed consent, they still use your DNA without your consent because they consider it “Their Property”.
One could make the argument that “If it Helps People” blah blah blah. But how does it help people when your results are going to a for profit company that is developing drugs that they turn around and sell back to you when “You” need it for something like $2,000? It doesn’t help no one but the people getting rich off of your code.
So perhaps before you go around calling people paranoid perhaps you should go do some research on the subject yourself. Or Don’t and just be another useful drone.
Thank you.
Gotta love it when someone calls another “stupid” and spells “you’re” as “your”. Now, who’s stupid?
Don’t forget in the case of 23andMe (and other DNA test purveyors) that not only the purveyor (23andMe, etc.), but the lab(s) they use to test the DNA have their own ‘right’ to keep your DNA, in many cases up to ten years–even if you opted for 23andMe (for example) to discard your sample once your results were available, the lab is not obligated to discard your sample as they are an entity separate from 23andMe and can store it. Who knows what happens to samples stored at these labs or what security measures are taken. It doesn’t matter that your sample doesn’t have your personal identity attached to it (name, address, etc.), it’s yet another unknown factor about what may happen to it until it’s discarded, if it ever is.
Family Tree DNA has their own lab, but Ancestry and 23andMe use medical labs. I have never heard this before about the labs storing your DNA. Can I ask about your source for this information? If you have links, I’d really appreciate you posting them.
Roberta,
The following is from 23andMe’s Full Privacy Statement;
3. What information we collect
b. Information related to our genetic testing services
1. Saliva sample and bio-banking. To use our genetic testing services, you must purchase, or receive as a gift, a 23andMe Personal Genome Service® testing kit, register an online account, and ship your saliva sample to our third-party laboratory. Once received, your saliva sample will be identified by its unique barcode, along with your gender and your date of birth. The barcode label identifies you to us but not to our third-party laboratory. Unless you choose to store your sample with 23andMe (called consent to “bio-banking”, which can be found here and changed in your settings), your saliva samples and DNA are destroyed after the laboratory completes its work, UNLESS THE LABORATORY’S LEGAL AND REGULATORY REQUIREMENTS REQUIRE IT TO MAINTAIN PHYSICAL SAMPLES.
The following link is from the Centers of Medicare and Medicaid Services regarding the Clinical Laboratory Improvement Amendments (CLIA)
https://www.cms.gov/Regulations-and-Guidance/Legislation/CLIA/index.html.
You have to read through the downloads in the lower half of the page, in particular “Research Testing and CLIA” and “Direct Access Testing.”
I haven’t been able to find the website that indicated independent labs can maintain samples for up to ten years, but I did read it online within the past one to two years.
I am by no means an expert on any of this, but my understanding is that the labs can maintain the samples they analyze if they so require. The next thing would be to research the specific lab(s), if possible, to find out if they in fact maintain samples designated for disposal by their client’s customer(s) and if so what if any remedy or recourse is there for the customer.
Thank you. That makes me very uncomfortable.
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I am flabbergasted. Thank you so much for this information.
I very much enjoy Roberta’s blogs. Her commitment to empowering the rest of us lay genetic genealogists with knowledge is greatly appreciated. As an IT professional who has worked with many health care organizations, our medical records are de-identified and sold to the big health care companies, the likes of which are GE Healthcare among others, without our consent. I think what’s most important here is the desire to collaborate on genealogy with atDNA. As mentioned earlier, every companies policy states it can be changed at any time and the acceptance is forced. So everybody keep testing wherever and getting that data onto gedMatch! Again, I can’t say enough about my sincere appreciation of Roberta sharing her knowledge with us.
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I am one of those who did not read Ancestry’s fine print as I should have done. In fact, I completely missed this company’s roll-out of ‘Ancestry Health,’ and have been telling relatives that DNA uploaded there would be used for genealogical purposes only … in contrast with 23andMe.
This is a major breach of trust. Like you, I feel that Ancestry is taking advantage of our zeal as genealogists. How many of us surrendered our DNA to this company in order to gauge personal/ familial propensities to certain illnesses? I’d thought that some people were making too big of a deal about Ancestry’s not providing a chromosome browser (we could always upload to Gedmatch). Now, it seems clear that Ancestry may be intent upon keeping the bulk of their customers in the dark about the profit being made as they mine our DNA – just as they’ve long done our family trees. Customers have always been their ‘source.’ That they entertain the masses with ‘DNA Circles’ and what-not, while selling the core of their subscribers’ physicality, is despicable.
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Can anyone comment on the validity of 23andme and their DNA relative results? I have a pretty big percentage match and don’t know whether to take it as concrete info or to get a second DNA comparison done at an independent lab??? Surely if we matched its legit right?
Go to GEDMatch and run it for FREE. See what results you get there. They have a chromosome browser and other nice features. The person or persons you match at 23&me might also have their results at GEDmatch or you may find some new matches there.
If it’s a large percentage match, it is highly likely that you and that person are related.
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I myself am a clinical geneticist and using 23andme primary for the health-related data so I was prety aware of how it could be used. And you know, designer babies.. I wouldn’t find them likely to happen (anytime soon, if ever) despite the patent, so this is not a concern for me at all. Surely the medical use of the data is much more likely, not for a reasons of etics but for state things are at right now. I certainly have no worries for what BigPharma is doing with the data, since except for paying large settlements for flase claims and patenting things to sell them for more longer, they occasionally DO produce new medications. No one else have currently the money to get them approved. To fix the skewed availability of my anonymized data only to players with money, I put them myself on non-profit sites, where any researcher can have them.
On the other hand since my earliest interest in genetics I was very concerned on how would common people deal with the very complex knowledge that is behind genetic information, how they would understand risks, interactions, knowing thing they maybe never wanted to know and also very importantly, possible misuse of their genetic data. For such reason I strongly agree there has to be clear, plain and honest way how to describe the terms of service and ensure the safety and privacy of data without taking advantage of the user, who is much less informed. It’s good genetic data cannot be used by insurance companies, but it’s not enought. They can be monetized in many other ways. I may know it, many others do not. Unfortunatelly, leaked genetic data is like a leaked credit card number, that you cannot block (for same reasons, biometric DNA usage should be very limited, you can change passwords, but you can never change DNA or fingerprints).
It is important to realize though, that genetic testing didn’t get such cheap just because of technology and number of users. It also gets cheap because you sign a hidden contract, that ends in the company either using your data on the side or by not giving you really full access to it and tforce you to spend additional money (I would call this personally a “MyHeritage approach”), and it’s not the technical part itself that is difficult, but mainly the analysis (but this applies pmore to health-related information, genealogic analyses are much more stright forward a less troublemaking). It is like asking, why is this so cheap? before you buy. One thing I don’t like on 23andme is they offer an incomplete raw data format, with variants that are unclear (in the browser you see the strand, in the raw data file, you do not and it is proprietary).
As for sample storage, CLIA guideline applies fo clinical laboratories, many of which are mandated to store samples for years for possible retesting. Since 23andme state that they do not diagnose any health condition, ithey have no need to store them. Using the policy above, they have no legal requirement and as such should not store the samples (but may in the future, if any of the things they test would fall as a diagnostic test). This is I suppose controlled by autorities in the US as well.
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Roberta,
Thank you so much for this article.
Are there any updates to this consent/privacy issue with either Ancestry or 23&Me?
Any way to retract the blanket consent that was hiding within the tiny little box we checked re “privacy policy” right before we paid for the Ancestry test?
Not that I know of, to either question.
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I have wanted to do this for some time. My ancestry is vague & I am curious as to how accurate my relatives have been in telling us about our heritage. Of course there is a “sake” this week & I can afford it, but in reading the consent I became concerned & your article makes me even more concerned.
I guess I need to quash my curiosity until I’m either on my death bed, or these companies allow me to opt out of sending my DNA samples or results to research companies with what appears to be an all or nothing option.
Sad.
Family Tree DNA does NOT sell your DNA.
Ancestry’s activation page provides the following statements regarding the research opt in:
“Data we share outside of Ancestry does not include your name, contact information or other identifying information.” Please explain how this is consistent with what this article states.
Ancestry’s Informed Consent document, dated 8 Feb 2017, states:
1. “Data, including DNA Samples, may be shared with Collaborators and Collaborator Partners, but will be shared without your name, contact information or other common identifying information. When your DNA Sample is shared, it is labelled only with a code.”
2. “Employees of AncestryDNA perform some of the research for the Project. We also work with researchers from other organizations and companies who share our Purpose. This might include academic institutions as well as non-profit and for-profit businesses or government agencies (“Collaborators”).”
3. “If you decide to participate, the Researchers may use your Data, including your DNA Sample, for . . . publication of research results in scientific or medical journals and in other publications and presentations. Names, contact information and other common identifying information is always removed prior to making any research public.”
4. All researchers, whether affiliated with AncestryDNA, our Collaborators, or Collaborator Partners are referred to in this Informed Consent as “Researchers.” ”
5. This Informed Consent . . . does not relate to our product research and development which is covered by our terms and conditions and privacy statements.
#1 says that Ancestry will not share data that can be tied back to you by a third party. However, #3 implies that common identifying information may be provided to third parties (how else could they withhold such data from publication?).
Given the activation page statement, perhaps what Ancestry’s Informed Consent document is stating that Ancestry researchers (a subset of Researchers) have access but that all other Researchers do not have access to all common identifying information. If this is what they meant, it could have been spelled out more explicitly. For example, #3 could append a single sentence at the end: “Collaborators never gain access to name, contact information or other common identifying information.”
Ancestry’s Informed Consent statement suggests that even if a customer opts in to the research component, Ancestry does not provide common identifying information that can allow third parties to tie DNA data to specific individuals. Am I reading this correctly because the article suggests otherwise? However, #5 above seems to leave a loophole for “product research and development”, which is covered by Terms and Conditions rather than Informed Consent.
Ancestry’s Terms and Conditions state:
A. “Ancestry shares information as you direct us to, for example, if you make your family tree public, share your DNA results, or consent to participate in our Research Project. To be clear, we do not share common identifying information linked to your genetic or health data with third parties unless we obtain your explicit consent or are required to do so.”
B. “Otherwise, we share information as described in our Privacy Statements, such as with our affiliated companies, other users, our service providers, our advertising partners, . . . ”
C. “We store your DNA test results and DNA sample without your name or other common identifying information such as your address. We do not share with third parties common identifying information linked to your genetic or health data except as legally required or with your explicit consent.”
A. reiterates that they do not share common identifying information, which is good, but then they add “unless we obtain your explicit consent . . . .” This raises an obvious question – is ‘explicit consent’ the same as ‘informed consent?’ This could be fixed by adding “supplemental to your informed consent” to the end to distinguish that the two terms refer to different customer agreements.
B. is an odd statement and seems to suggest that Ancestry engages in data sharing that may not be covered by either the Informed Consent nor the Terms and Conditions documents. I did not crack open the Privacy Statements and am hoping someone else can clarify what information that document(s) includes that are relevant to understanding whether common identifying information may be shared under any circumstance.
C. After defining ‘Collaborators’ and ‘Researchers,’ these documents ignore those terms and use undefined terms like ‘third parties’ instead. This makes it unclear what the documents allow and prohibit.
So, despite spending some time with Ancestry’s documents, it is still unclear to me whether Ancestry allows anyone aside from Ancestry employees to view my DNA data alongside my identity. I am no expert on contractual language but based on this cursory review, Ancestry’s legal documents seem needlessly vague and/or intentionally evasive.
Can anyone help me understand what Ancestry’s updated Informed Consent, Terms and Conditions, and Privacy Statements actually mean in a paragraph or less? I just want an ironclad statement from Ancestry saying that they will never intentionally share any data that allows a third party to tie my DNA data to my identify.
People who have left comments about being “all for” these companies using/selling their DNA for research or scientific studies did not get the point (even though there are more than one). These test’s are not just about the person who made the CHOICE to swab their cheek. This can damage people you’re related to in a million and one different ways without them even knowing it. I can honestly say that I would have been that person to just click the “Terms and Conditions” without even giving it a quick look over. Who knows the nightmares these companies can /could cause by selling DNA to an unethical insurance company, a crooked police department, or an immoral laboratory? You better believe from now on I will be reading every single, time consuming “Terms and Conditions” that crosses my path. Thank you so very much for educating me on a decision/idea that my family was sooooo close in making. Looks like we’ve got a lot more research to do! Thank you!!!!
Hi what I’m curious about is if the 2 companies use the same lab? I would like to have a 2nd opinion on my results from Ancestry, I am strongly looking to send my DNA to 23 and Me for a second look? Anyone with this information I would be grateful to find out!
They do not use the same lab. None of the 3 major players do. Family Tree DNA is the third company that you could consider.
From the comments, some people don’t seem to care what companies do with their DNA. That’s their privilege of course. Someone said if her DNA was being used for good then she’s fine with that. So am I, but I would never assume that it was being used for that purpose. There are just as many ways to use DNA for bad, as for good. Also what if it helps some ratbag company to patent some gene so as to make huge profits and deprive poorer people of any benefits. It happens frequently.
So, Ancestry, 23andMe, and any other company should provide genuine opt-outs, and the terms for consent should be unambiguously placed on the front page rather than buried in the small print.
Will it ever happen? Ha!
For the most part I am very much with you on the content of your article. I most agree that a good sound change needs to be done. Let me share with you where I am coming from.
I think for now I am willing to continue with DNA testing. All my life I have wondered who my bio-dad was. I did the Ancestry.com DNA test.Then earlier this summer people starting coming up close to me on the shared match section of the Ancestry site. Some of them starting asking me just who I was. I told them my story of trying to find my bio-dad. I was such a close match that they knew I was a relative and starting wondering who in the family could be my father. Some of them are so supportive that they are encouraging others in the family to do the DNA test so as to help me find my dad. And it seems I am getting closer. So as I said, I am with you on the content of your article. But with that said, I hope much to find my real father before the Lord takes me from this earth.
Singed, just a guy looking for dad.
That touched my heart.
Yes, in life, there are compensating balances; and one size does not fit all.
Good luck in your quest.
Thanks for publishing this.
i purchased some kits from 23 on Amazon. It has been longer than 30 days of purchase, but the kits are unused/unopened. Do you know of a way to return them for a refund?
I have no idea. I would call the company or contact Amazon.