Not happy with the AncestryDNA deal?
The announcement came in just about a week ago, that AncestryDNA had finally begun to do what The Legal Genealogist and many others have long expected it would do: monetize its huge and fast-growing DNA database.
The press release, entitled “AncestryDNA and Calico to Research the Genetics of Human Lifespan,” was issued July 21st, and announced that:
AncestryDNA, an industry leader in consumer genetics, and Calico, a company focused on longevity research and therapeutics, today announced an effort to investigate human heredity of lifespan. Together, they will evaluate anonymized data from millions of public family trees and a growing database of over one million genetic samples. Financial terms have not been disclosed.
AncestryDNA and Calico will work together to analyze and investigate the role of genetics and its influences in families experiencing unusual longevity using Ancestry’s proprietary databases, tools and algorithms. Calico will then focus its efforts to develop and commercialize any potential therapeutics that emerge from the analysis.
“On the heels of our AncestryHealth launch and our one million genotyped customers milestone for AncestryDNA, we’re excited to announce this collaboration with Calico to research and develop life changing solutions,” said Ken Chahine, Executive Vice President and Head of DNA and Health. “We have laid the groundwork for this effort through the combination of an unmatched family history database, one of the fastest growing genetic databases, and a strong and talented team of computer scientists and professional genealogists.”1
And then came the paragraph that broke the bank for me: “AncestryDNA can provide access to a unique combination of resources that will enable Calico to develop potentially groundbreaking therapeutic solutions. The extensive research period will identify common patterns in longevity and human heredity through pedigree data.”2
Pedigree data. Not genetic data. Family trees. Not just my genes and my SNPs and my quirks. But the genes and SNPs and quirks of those who may be linked to my tree. People whose data I may have entered. People who didn’t ever think that their history, their lives, their predilections towards specific conditions might be disclosed.
Now — to be fair — AncestryDNA has disclosed in very plain very simple English from the outset that anyone who gives consent for AncestryDNA to use data in its research studies is consenting to the gathering and use of every bit of data Ancestry has on us, including “genealogical pedigrees, historical records, surveys, family health data, medical and health records, genetic information, and other information…”3
And in response to the question “What information will be collected?”, the Informed Consent form makes it abundantly clear:
The Project will collect Information (as defined above) consisting of genealogical, genetic, and health information. “Genealogical information” is your pedigree, ethnicity, family history, and other information about you and your family that you provide, gleaned from documents and information on Ancestry.com’s family of websites and other locations, or is otherwise publicly available. “Genetic information” is your genotype that is discovered when AncestryDNA processes your saliva, is otherwise provided by you, or is gathered by us with your consent. Genetic information is in your DNA, and it is what makes you different from everyone else. DNA controls things like the color of your hair or eyes and might make you more likely to get certain diseases or affect whether a drug helps you and/or gives you side effects. “Health information” is health-related information provided by you (if you choose to use the AncestryHealth tools and agree by accepting the Informed Consent) such as responses to our family health questionnaire(s), medical conditions, diseases, personal traits, and other information, medical records and electronic health records you either upload or provide consent for our gathering; documents on Ancestry.com’s family of websites and other locations; and/or information available via publicly available documents.4
So nothing has been hidden in terms of what the consent form covers. Opt in to this research, and you’re giving AncestryDNA about as close to carte blanche to collect intensely personal information about you — and about your family members — as it’s possible to construct legally.
What hasn’t been so clear is that you don’t have to agree to participate in the research project in order to test with AncestryDNA. Here’s what the essential part of the web page looks like today to activate an AncestryDNA test kit:
So you can see that the checkbox for opting-in to the research project appears sandwiched in between a box most people want to check — to get their ethnicity percentages — and a box all people have to check — to accept the terms and conditions.
Nowhere on that page does it say in plain terms that you don’t have to check that box. For the longest time that page didn’t even distinguish with the asterisk between required agreements and optional agreements. And even now, nowhere on that page does it say what information you’re consenting to disclose if you do check that box.
Yes, we all should know better than to simply click a checkbox. Yes, AncestryDNA has a hot link to click through and actually read the Informed Consent document and the terms and conditions. Yes, we should read every word.
And the simple reality is, most of us don’t bother reading all this stuff. Most of us don’t bother reading any of it. We just click click click.
So when AncestryDNA says that many hundreds of thousands of its more than 1 million test takers have agreed to participate in the research study, I don’t believe for one minute that more than a tiny fraction knew that (a) they didn’t have to agree and (b) if they did agree, they were agreeing to disclose every last jot and tittle of their family history.
For those who did, terrific! If you’re on the cutting edge of science and want to contribute to all studies everywhere and you know your family is good with this, checking that box was the right thing to do.
But for those of us who are discomfited by this commercialization of data that doesn’t belong exclusively to us… what do we do? What can we do?
We can opt out.
The AncestryDNA informed consent agreement isn’t a sign-it-once-and-you’re-stuck-forever deal. If you checked that checkbox and are uncomfortable with the idea that your family tree data could be disclosed to a commercial company, even with identifying names and the like removed, you can change your mind:
You can decide not to be in this Project and, at any time, you may choose to withdraw some or all of the Information you provided by sending a request to consent@ancestryDNA.com.5
That won’t retrieve any data that’s already been used for research before you opt out, and “any study results or findings that have been published prior to this date cannot be reversed, undone, or withdrawn.”6
Should you opt out? That’s up to you. You’re the only one who can decide how you feel about the idea of a commercial company having access to your family tree data, even anonymized data.
I can only tell you that, the more I thought about it, the more I thought about the launch of AncestryHealth (collecting family health data linked to family trees), the more I thought about the kind of information that could be collected about other members of my family who never personally consented — who may not even know there’s such a thing as Ancestry.com — I felt that I’d been pushed beyond my comfort zone.
I have opted out.
SOURCES
- Ancestry, “AncestryDNA and Calico to Research the Genetics of Human Lifespan,” 21 July 2015, Press Releases, Ancestry.com (http://corporate.ancestry.com/press/ : accessed 25 July 2015). ↩
- Ibid. ↩
- AncestryDNA Informed Consent, AncestryDNA (http://dna.ancestry.com/ : accessed 25 July 2015). ↩
- Ibid., paragraph 2, “What information will be collected?” ↩
- Ibid., paragraph 12, “How do you withdraw from this Project?” ↩
- Ibid. ↩
Wow… I hope the Heinlein Estate is getting a chunk of any profits. His “Future History” series was based largely on impacts of society springing from The Howard Families, a genetic line self-consciously bred for longevity. Niven’s “Known Space” series also had the Struldberg Club, a society of long-lived humans, as a motif.
I am a big Heinlein fan, and remember wishing I’d been a Howard!!
Thank you for this useful blog entry, Judy. I just opted out for my own kit as well as my husband’s kit.
Janis
TRhank you. If I had a kit at Ancestry, I would most certainly opt out – if I also had a tree.
Thanks for keeping on this issue. Your previous warnings have helped me make the decision to not participate in DNA testing at all.
That’s an individual choice, Brian, but not one I’d personally make. I have no problem sharing my own DNA data. Mine. Not linked to anyone else.
Brian, to my knowledge, FTDNA doesn’t share with anyone. Those of us who have tested with them can be confident our privacy is protected. DNA testing can be a great help for us in our own genealogy research. Please don’t throw out the baby with the bath water.
I have NOT opted out. I think it is a good thing to be part of a research study that might benefit others. The data is being used without any names so I don’t think it will harm anyone. Certainly not my deceased relatives. It might help someone now living or who will be living in the future. So many helpful medical discoveries based on research are being made and I hope by opting in I can be a small part of it. I also stood in line to take the polio vaccine when I was a child. That was a lot more risky than this and think of all the lives saved as a result.
That is your individual choice, Joann, and there is no right or wrong here. It’s more a matter of individual comfort levels. Those who want to stay in the project can; those who don’t can opt out.
You can’t just opt out on the site? It has to be via email only?
That’s correct. You never have to opt in — that’s a choice you make when you activate the kit (and where I object to the way the check boxes are presented). But once you do opt in, the only way to get out is to send an email, and it has to be from the email account associated with your Ancestry account.
Judy,
I went to settings on my DNA kit and, although it says I had previously opted in for the research project, I don’t see anything that allows me to change that. What am I missing? Can you give instructions for finding the cleverly hidden opt out setting?
Don
You can ONLY opt out by following the directions in the paragraph at the bottom of the blog post: “You … may choose to withdraw some or all of the Information you provided by sending a request to consent@ancestryDNA.com.” The only way to opt out, once you opted in, is to send that email.
Ah! ha ha… that explains it! Wouldn’t want to make this easy… Thanks, Judy.
Glad to help.
I want to opt out I no longer have a need for ancestry DNA
If all were right in the world you’d have to opt IN. What happens a few years down the road when some of these people have passed and they come up with another harebrained way to make money off from them?
You did have to opt IN, Ken. That’s at the very beginning when you checked off that check box. If you didn’t check that check box, then you didn’t opt in and you don’t have to opt out. It has been an opt in system all along. The problem is in knowing what we’re opting in to.
Can you opt in at a later juncture if you initially opted out?
Yes.
Here’s my little quibble: they aren’t researching something that will identify precursors to disease, or the nature of a particular disease in order to develop treatments for it. They are researching a genetic link to longevity for commercial purposes, as yet undetermined. Now, my entire extended family, several generations of us comprising hundreds of people, once took part in a full-bore genetic study by a well-known medical institution because some of us carry an autosomally dominant genetic mutation relating to cartilege production and bone-end closure in childhood. The goal was to identify the gene and its location so that future research might be able to identify both it and other kinds of cartilege related disorders, and possible ways of treating the cascade of events that result in cartilege disorders. The study was successful in identifying the target gene, and in associating it with other genes.
It was a big deal at the time, one of the first studies of its type. EACH ONE OF US signed a release. Since then, I have participated in genetic studies with similar purposes, done by non-profit medical institutions for the purposes of learning why people respond to a particular disease in different ways, and which treatments produce better outcomes. Each of us who participated had to sign a study-specific release.
So I am not against medical DNA studies. I would happily volunteer for another, if done by a research institution I respect, for purposes of better understanding a disease process, and if my informed consent were obtained aboveboard. I am deeply bothered by the under-handed manner in which Ancestry/DNA has set up their system of gaining permission to use any and all data that people have provided them, unaware of what they were giving away. No one should have to opt OUT of something like this, especially without full disclosure of each event.
Ancestry itself seems tainted with questions of integrity and ethics. Though they have made resources available to many people, they have done so too often with questionable tactics and unsustainable claims. As far as I’m concerned, Ancestry/DNA just stepped over the line.
Annie, this has always been an opt-in system. The hitch has been in the way the opt-in was handled. So people now are realizing they didn’t really mean to opt in, and may want to opt out.
Hello Judy,
My family have all passed. They are listed in my tree as well as many other trees. I have not done DNA testing to date, but would opt out if I did. If one of those folks from other trees chooses not to opt out and they are in my line how would this effect my family?
Since the data is supposed to be anonymized, it shouldn’t affect your family directly. If if say a child or grandchild did test and included your information, then AncestryDNA could include that in its study as long as it was entirely anonymized.
I don’t see how the research will result in any reliable information. If they are using information from the trees on ancestry, that’s their first mistake. Many of those trees are full of errors. It will be like using contaminated equipment to perform experiments. So, unless ancestry can eliminate faulty information, the whole idea is a waste,of resources.
It certainly does raise some issues, but remember that more recent data is linked to public records (including death certificates and more) and so is likely to be far more reliable.
Perhaps, but still, if an “ancestor” is attached to your tree and the ancestor isn’t really related to you, then those records don’t give accurate information about your potential longevity. I have two cousins who have attached the wrong ancestors to their trees for whatever reasons. Even though they “know” these are not their own ancestors, they keep them connected. Is Ancestry going to examine every document to verify that every tree has accurate information?
Not likely, but in the aggregate at this level of research it probably balances out.
Alice , you are completely correct. I wouldn’t have thought of errors in trees off hand, but with every one copying info instead of doing their own research what good will these incorrect genealogies be for a research project anyway? There are so many of these trees and I bet that a majority of trees are incorrect. I’m really surprised ancestry didn’t think about that from the onset of this proposed project ! Good for you !
Judy,
What would you suggest we write in the email?
Would “In light of the recent press release about AncestryDNA’s collaboration with Calico, I now choose to opt out of the Informed Consent to participate in the Research Project” work?
Would you recommend sending a separate email for each kit (I only have two with Ancestry – for my husband and I ) or one email and give each kit number?
You don’t have to give them a reason, Emma, but if you choose to tell them why, I’m sure they will note it (at least for their internal purposes). If you manage two kits, and both are linked to your email address, then you could probably send one email.
Judy;
Do we need to provide a kit number for tests that have already been activated? I have four for other family members and myself, and I don’t know what the kit numbers are.
I don’t think so, because I don’t think Ancestry assigns kit numbers. Try sending whatever notice you think is appropriate, giving all the information you have about the kits. If it’s not enough, they’ll tell you in the return email.
OK, thanks for filling us in on this! If we opt in, it should be because we understand the terms and choose to do so anyway. Your insight on this is invaluable!
Judy, Judy, Judy! You intimate a feeling of betrayal and loss of trust, but not one single time do you articulate how you have been damaged or your privacy breached. Ancestry was very direct in listing out the details of the consent. Why would you want to inspire people to back out? Do you not realize how significant this research is? Never before has a genetic and genealogical database such as this been available for scientific scrutiny. Very simply, you are playing to the fear factor and, I might add, making a play for personal edification by staking a claim to the moral “high ground.” And should your fear turn out be communicable, it will diminish a worthwhile scientific study. Longevity simply cannot be reliably researched without this kind of data. If ever Ancestry was partner to a noble effort, it is this one. And we are a part of it, and should be proud pioneers. Regrettably, though, you’re just one toke over the line.
Walter, this may be the most significant scientific study in the world, and that still won’t resolve the ethical question of using someone else’s data who hasn’t consented. I have absolutely no objection to the use of my genetic data. I’ve consented to that with other research programs. But my own personal comfort level doesn’t extend to thinking that I alone can say it’s all right for a commercial firm to take everything about my family members that I’ve ever used for genealogical research and use it for its purposes. It may well be a noble research cause. But if my family members want to participate, they need to say so. I am simply not comfortable saying so for them. They did not consent, and the data being sold is not mine alone.
Judy, your strongest argument lies with family data. So let’s take a look. What family data, for which permission might be nice, is being shared? Let’s take the deceased family members off the table since they can’t give permission. Now then, what private data might be shared? Is it DNA? Nope, that’s yours alone (although one might argue that YOUR DNA reveals other family members’ traits). Is it birth date? Nope, that’s public. Gender? Nope, that’s public. Number of children and their gender? Nope, that’s public. Race? Again, nope, that’s public. Hmm . . . that someone exists? Public. That they were married to a certain person? Public. Help me out here, Judy, I’m having a hard time understanding what holy grail of private information about a family member might be sucked into this evil enterprise. I think it goes without saying that handing over public information does not constitute any ethical breach, especially if it is anonymized. I’m not saying you don’t have a point. But a little illumination of the privacy threat to family members is, in my opinion, in order. So, what am I missing?
It’s the combination of genetic and genealogical data that strikes me as the most troubling — and anonymity (we have all learned, only too often, from data breach after data breach) can’t really be guaranteed, no matter what precautions are taken. So combining my genetic data with my family’s information makes it far more likely that actionable information (history of heart disease, as one example) could be disclosed where it ought not to be. Even if the risk is small, it’s not a risk I personally choose to take on behalf of other people. If you do, go for it. Nobody is stopping you from opting in. I’m not comfortable with it, so I’m opting out. It’s really that simple.
This similar to questions about whether a particular document or piece of data should be classified. An individual item itself may be public domain. Your DNA test certainly isn’t (until you give permission). However, it the aggregate picture of related items that creates the classified whole, therefore seemingly innane items are classified.
Yes, the people of in your tree left publicly available data behind in census, phone directory, birth- and death-certificates. But it the unique picture of how your ancestors are assembled that provides a valuable picture. Couple that with other trees (and DNA testers within) that share common ancestors, and the picture is even more revealing and valuable. The ancestors between the two DNA test participants may or may not have wanted to be a part of this.
I wonder if DNA testing for genealogical purposes will eventually take a beating with companies like Ancestry.com and 23andMe (who was literally propped up by us during their FDA blackout). At least we have FTDNA.
It is plain and simple, Walter. It is lack of ethics! Ancestry has none. They solicit information, given to them freely and for free, I admit, then churn, mix, regurgitate and sell it to unsuspecting researchers, medical or genealogical as fact, when it contains a high concentration of garbage. It is all for profit not for longevity research. If Ancestry is not and has never been concerned about accuracy. It is all about the dollars.
…Ancestry is not and has never been concerned about accuracy…
I don’t even remember which is checked! Geez…
It’s easy to check. Go to your Settings page and look on the right hand side. There’s a box that will say if you checked the consent box. And remember: you want to think about this. It’s not an automatic “I’m not doing this!” You may decide it is the right thing for you and your family. Just do it after thinking about it, and the scope of it.
As much incorrect and/or unproven information exists on family trees, I cannot imagine they will have much success.
🙂 That may be an issue, for sure.
There are many folks who take the test for the fun of it. And there are those of us who enjoy genealogy and take DNA tests to further our understanding of our ancestors. We tend to try to link those other “for the fun of it” testers with our own trees. That’s all you really need – some well-researched trees linking multiple people. The “good” trees usually have a bunch of records for each ancestor, the others don’t. Even if a small percentage of testers have well-research trees, they likely make up for the rest of them.
Many good researchers don’t put more than basic trees online, however.
This is like deja vu. Our friends at 23andMe play the same “opt” game. I did opt in initially and will opt out now for purely selfish reasons and possibly for hypocritical reasons because that is what they are. I opted out of research at 23andMe because they were not listening to the genetic genealogy community. Not at all. They placated the community in regards to automatically showing close matches and due to a poorly written, inflammatory and self serving mantra reversed their decision at the last minute. AncestryDNA is not quite that bad but they still will not give us what we want. Citing the ignorance of ancestry.com members and privacy concerns (great walls to hide behind). Then they turn around and sell our data. Fine when you give me a chromosome browser and other genetic genealogy tools I will give you my data to use. I have no problem helping mankind but would like a little consideration for my data. AncestryDNA, can we get an ICW capability and Chromosome Browser? NO, well then you cannot have my data to use and sell.
It does seem just a tad hypocritical to say privacy concerns are so great that we can’t be trusted with our own match’s segment data… but they can be trusted with this much of ours (and our family members’)…
I am 73 years old, never commited a crime, never had children. what have I got to lose? I’ll probably never see the results anyway. I’m not going to get up tight over this. I’ll leave that to others 🙂
You’ve made a judgment call here, and as long as it’s right for you, go for it!
After looking up California Life Company and discovering it is owned by Google and AbbVie, a ‘big pharma’ company headed by Levinson, I’m very skeptical that anyone opting out will really be excluded. Big pharma is interested in one thing only – massive profits.
The goal of AbbVie is to sell drugs to desparate people, for as much money as they can squeeze out of insurance ompanies or Medicare/Medicaid, not to benefit public health. The scope of this project is a good example of what happens when venture capitalists take over health care, and the art of practicing medicine becomes ‘just business’. It’s all about the money.
I purchased the ancestry DNA kit several months ago and have not sent it in due to lingering concerns over how the data would be used. Now I’m wondering if ancestry has already simply turned over all the information in every family to Google/AbbVie/Calico with or without our consent. We will never know. The only certainty when dealing with corporate business in America is knowing ‘business ethics’ is an oxymoron.
I also wonder how much money has privately been paid to ancestry executives. Data mining is a huge growth industry in the U.S.; one in which every citizen is considered nothing more than a data stream. My opt out for now is to put that DNA testkit on a back shelf. Who knows what other companies will purchase the data, or hack it, from California Life or AbbVie or Google, or arrange a sale with a low paid clerk who has passwords.
To those who think this is an altruistic endeaver – Heaven bless you, and I hope you are at least a little bit right.
The liability for simply turning data over without consent is enormous, so I’m not worried about that. And even if this isn’t altruistic in the real sense, I hope it succeeds in creating some benefit, and would happily share my genetic data to help it along. I’m just not personally comfortable in allowing broad use of data that isn’t exclusively mine.
Me, too. So I’ll wait and think on it awhile before I spit that container. Sending you smile, Judy, and a thank you for the daily information and inspiration.
My DNA results may be based on DNA attributed to my parents line for several generations. But I am finding that many children were taken in and adopted as pioneer families were wiped out by disease or attack. Even my own grandmother is noted on a census as a granddaughter but there is no information on her parents. Adopted? Blood Relative? My parents suspected she came into the family from an Orphan train. I will probably never know her role in the family line. And I would not match the supposed line. Seems like there must be many similar family stories. Their research and results will be based on only known facts and probably incorrect.
You’re quite right, but I suspect most of this research will be in more recent generations where — overall — there will be some paper trail to support the tree.
When I agreed to sharing, I thought it was my DNA only. I did not realize that my tree would be included. I have written to Opt Out of sharing my tree.
Thank YOU, Judy! As usual you put all our options on the table in a very comprehensible way in order for all of us to make a good decision! All I can say Judy Russell, the Genealogy Community needs their Regal Legal Genealogist now more than ever! Bless you!!
The consent on the site is for the Ancestry run AncestryDNA Human Genetic Diversity Project that has been ongoing since AncestryDNA began in 2012. Why are you lumping in the Calico project with this consent form? Calico is not a part of Ancestry. So after reading the following on the informed consent on AncestryDNA where do we find the informed consent for Calico?
“This Informed Consent gives you information to help you decide if you would like to participate in the research project to be performed by AncestryDNA and its affiliated companies, including each of their respective websites and services (“us” or “we”).”
It’s the Informed Consent agreement that gives AncestryDNA the right to enter into the agreement with Calico. The “project” is defined in the agreement as “research studies to better understand, among other things, human evolution and migration, population genetics, population health issues, ethnographic diversity and boundaries, genealogy, and the history of our species (“The Project”)” and the agreement itself allows AncestryDNA to work with third party researchers like Calico.
Doesn’t “and it’s affiliated companies” include anyone they want to partner with?
In the context of the Informed Consent agreement, yes. Not for those who opt out.
Since AncestryDNA and I are not on speaking terms, and because of all the reasons you said with which I agree, I opted out when I activated, and the kit will remain so. Thanks, Judy.
I revoked my permission and this was the response from Ancestry,
“Withdrawing will exclude your permission from Calico and and other research project that Ancestry will be involved with.”
It is an odd way to state my permission was revoked. In fact the language is a bit confusing.
It appears that they’re trying to explain that you can’t just revoke permission for the Calico study. Withdrawing consent means withdrawing from all studies and all research projects in which Ancestry is participating.
AncestryDNA have always indicated on their consent form that they will collect genealogical pedigrees and that the data could be used for medicine. They just seem to have made the health research aspect more explicit. Roberta has a copy of the old consent form from 2012 on her blog:
http://dna-explained.com/2012/08/16/ancestrys-consent-form-for-ancestrydna-autosomal-test/
I was one of the few who did read the consent form at the time and decided that I didn’t wish to participate in the research because I couldn’t find any information about what the Human Genome Diversity Project (as it was then called) involved:
http://cruwys.blogspot.co.uk/2012/08/my-ancestry-autosomal-dna-test-part-i.html
I agree with you entirely about the deceptive way in which consent is obtained for participation in this project. If consent is to be informed then the process should be fully transparent.
Note too that the privacy statement and consent form were updated in February this year:
http://cruwys.blogspot.co.uk/2015/06/the-ancestrydna-international-roll-out.html
I only received a notification from AncestryDNA about the new privacy statement on 29th June.
If consent is to be informed then the process should be fully transparent.
Bears repeating!!!
Here is text one can use to opt out:
Dear Ancestry.com
This email serves as notice that I hereby request to opt out of all current and future research studies and projects conducted by Ancestry.com and/or third parties as defined in the Informed Consent Agreement published by Ancestry.com at http://dna.ancestry.com/legal/consentAgreement [as accessed on __ July 2015].
Signed,
That works, but any language that says “I’m out of here” works too. Nobody should get hung up about the exact words. “I withdraw my consent” is just fine.
Merci, Judy, for the clear details and discussion. Of course when we join a commercial company for our own personal reasons, we should never be surprised when it looks for many ways to monetize our relationship with them…
I remember being thrilled to provide my DNA to the Sorenson group, and shocked when it became part of Ancestry’s databases… Oh well. Some things I can control and I do, and some things I can’t. Consent is one of those things I CAN control. Caution is needed, and as you point out, it is a personal decision for everyone. Thanks again for being here.
it is a personal decision for everyone
Another “worth repeating” comment!!!
Hello,
I am wondering where the link to Opt Out is located on Ancestry? So I can tell others who do not read your blog, might be able to find it.
Thanks.
There is no online link. As the blog reports, you must send an email to the address shown in the consent agreement (consent@ancestryDNA.com).
Thank you Judy G. Russell for the information. =)
I think it is poor practice, but probably intentional, that Ancestry makes it far easier to inadvertently opt in (with a quick check-box adjacent to check-boxes that need to be checked) than to later opt out (i.e., having to write an email — and you have to search to find this out). Shame on Ancestry! Maybe I’ll write to the Research Ethics Board who reviewed and approved the Ancestry Human Diversity Project (Quorum Review, http://www.quorumreview.com/contact) and point this out to them, and will suggest that it would be more reasonable for research participants for a quick opt-out check-box to be provided.
>> probably intentional
🙂
So I opted out a few days ago, and got a response today. They did mention they will exclude my DNA from future research, however, they also stated the following, which is concerning:
That means that the only way to protect your tree from being used is to not make it public. (Most of mine are already set that way, but I am considering pulling the others from Ancestry and hosting them elsewhere with better privacy for its users.
Judy, have you considered evaluating the various “tree” sites and contrasting their privacy clauses and protections? I know you have nothing else to do! 🙂 ha
Thanks for highlighting this issue for us.
~Mike Bronner
I have written about some of these issues, Mike, but there are only so many days…
What went through my mind:
“AncestryDNA, an industry leader in consumer genetics, and Calico, a company focused on longevity research and therapeutics, today announced an effort to investigate human heredity of lifespan. Together, they will evaluate anonymized data from millions of public family trees and a growing database of over one million genetic samples.”
And will then build a database that is as reliable as the Ancestry Public Member trees.
Yeah, there is that… 🙂
Thanks Legal Genealogist and readers of this article for their comments. I belong to the group who is on ancestry at night and not entirely alert.
I grateful for your research and taking the time to share. I am African-American and should know better. Remember the Tuskegee Experiment and now most recently H. Lachs.
It’s just a matter of being careful and knowing what we’re agreeing to.
Thanks for this info. This will help many towards truly INFORMED consent.
I’ve been giving this a lot of thought over the past few days. I have decided NOT to opt out, for the time being anyway. I have some insight into how Genome Wide Association Studies (GWAS) work, based on my association with 23andMe. I’m comfortable with the use of anonymized and aggregated data in Ancestry’s collaboration with Calico’s longevity studies, and I don’t feel that I’m trampling on the rights of others by granting this consent. (I am operating under the assumption that pedigree data will be coded, but I have a query pending on that issue.) I’m not the sole custodian of my ancestors’ DNA, and I can see how combining pedigree and genetic information could provide insights that typical GWAS can’t achieve. I wish them luck, though — even what seems like a straightforward trait such as height is hard to sort out with GWAS.
HOWEVER, I will NOT be providing any family health history to AncestryHealth. Genotype data and genealogical data gain their utility by correlating them with phenotypes. Longevity is a phenotypic trait of our ancestors, not of us. Providing phenotype data for family members does cross the comfort line for me.
I understand your decision, Ann, but would simply note that what you describe as a specific type of phenotypic data (longevity) can be readily inferred from a family tree that includes dates of birth and death.
Exactly, and that’s why I’m comfortable with it. Perhaps I should have said providing *other* types of phenotypic data for family members would make me uncomfortable.
Got the distinction now, thanks.
Hello;
Sorry if this question was asked before: Does Ancestry send a confirmation e-mail, confirming that your DNA was, in fact, “opted-out” of this?
–Melissa
Yes, there should be a confirming email, and once your test is opted out, you will see it on the settings page at AncestryDNA in a box at top right labeled Consent Agreement, where the language will read (somewhat inaccurately for those who withdrew consent) that “When this DNA test was activated, consent was NOT given to participate in “The AncestryDNA Human Genetic Diversity” research project.”
According to Wikipedia Calico is an independent Research and development biotech company established in 2013 by Google Inc.
So if Google is part of this can you guess where ‘your personal DNA’ information will wind up?
As far as I am concern I think that it does not matter if you opt in, or out, because Google can afford lobbyist to have some kind of law enacted that once your dead for fifty years your DNA record revert to the company[s] that hold the information, and / or, to the ‘highest bidder’.
Being a longtime researcher I must admit that Family trees on Ancestry have helped me accomplish project goals, but I have never been in agreement to the exchanging of DNA information – due to possible legal aspects, personal insurance, and health insurance.
When in doubt ‘Caveat Emptor’ and if you do not know what it means then Google it.
It seems to me that Government legislation is going to have to intervene on this in order to protect people.
I oppose government regulation because it will not benefit individuals. It’ll only end up with everyone else (doctors, insurers and the like) having access to our data — and not us.
Do these options appear when you purchase the test, or when you receive the results?
Not seeing anything in the order form, that allows you to opt out, or even mentions it.
Kevin
Thanks for updating all of us.
When you first activate your kit, you will be asked at that time whether you agree to participate in the research study. If you do not opt in at that time, you will never need to opt out.
I appreciate your helping people to make an informed decision, although I plan to remain in.
Everyone has reasons for this decision, pro or con, Eileen. As long as the decision is informed, it’s good.
Hi, I’m considering doing the DNA test to assist with the family tree without opting in to the research project. Does ancestry.com provide access to insurance companies. Should I be concerned regarding future insurance disclosures if a DNA test is done?
There is a federal statute called the Genetic Information Nondiscrimination Act of 2008 that bars insurance companies from using genetic testing data to discriminate. It only applies to companies with 15 or more employees, but there are also some state statutes that fill in the gaps for smaller companies. If you test only for ancestral data, and not for health at all, then the risk is minimal, and if you are concerned, testing with Family Tree DNA (which specifically avoids testing for health markers) is a good choice.
Thank you Judy. I forgot to mention I am Australian. I know there is often data sharing between Australia and the USA so I hope the 2008 Act you mentioned would ensure Australian Insurance companies are bound by similar privacy laws and are unable to access ancestry data.
Oy! Yes, that definitely makes a different, Helen. In Australia, health insurance is community rated and genetic info can’t be the basis for discrimination. Life & disability insurance is an issue, as is employment if the employer can show a specific link between the genetic test and the particular employment. An employer can NOT say, for example, that the test shows a genetic predisposition to, say, heart disease, so it won’t hire the person — there has to be a provable link between the employment and the condition. A general report you might read is at the Australia Law Reform Commission (2003), http://www.alrc.gov.au/publications/report-96.
This study is domed from the beginning , because not many trees are documented as most people copy from other incorrect trees and very few have done their own documentation. I’m very disappointed with ancestry for not approaching it’s members about ancestry’s intent and not getting individual permission from it’s members. I never would have known about this and I thank everyone who has brought this to the surface for all to be aware of.
I really think Ancestry was being pretty sly there. They should have used a yes/no option for the informed consent instead of a checkbox. It’s really basic coding. I hope they’ve corrected that page. I don’t think an ancestry site should be branching into health. Stick to the core business.
For new tests being activated today, the participant must check one of two boxes, one of which says he/she has read the terms and conditions and gives consent to participate or one that says he or she does not give consent.
One of the reasons that I have never put a tree on Ancestry while I have one on FTDNA and one on my Heritage. I have seen very few trees on Ancestry that have the correct information on any of my families and You better look at the original censuses if you want the correct information as many of their interpretations are incorrect. I have tested many family members on FTDNA and appreciate their tools. I always recommend them to people asking me about dna tests.