Let’s not overstate the case…
In legal circles, the phrase “with all due respect” is used to preface a statement or set of statements that can roughly be summarized in two words: “I disagree.”
That’s pretty much the reaction of The Legal Genealogist to a piece written by another New Jersey lawyer (update 2018: his post now here) about the legal issues and risks inherent in DNA testing in general and testing with AncestryDNA in particular.
It’s not that everything said in the article was wrong; to the contrary, much of it is absolutely right. It’s more that perfectly ordinary facts are presented in alarmist terms, as if they were new or surprising or unusual when they’re none of those things.
Let’s start with one thing the article says that is wrong: that testing means the testing company owns your DNA forever but you lose your ownership of your data after a period of years.
Um, no. With all due respect, there’s nothing in any company’s testing terms and conditions that strips you of your right to your data down the road. Your data remains your data, period.
You do have to agree to license your data to the testing company in order to test. The company can’t analyze your sample, compare it to others’ data, report your ethnicity estimates or present you with your match lists if you don’t allow it to do so.
It is true that you give AncestryDNA a broader forever-and-ever license when you test. You are agreeing, in the terms and conditions, to allowing the aggregated use of your anonymized data with that of other customers for research that may end up with a commercial application — and you won’t personally benefit. No royalties, for example.
There’s nothing new or startling or unusual about this. It’s clearly spelled out in the terms and conditions. I’ve written about this in the past, as have other bloggers. If you don’t want your data used this way, don’t test. Or at least don’t test with AncestryDNA.
Next, the article sounds all kinds of alarums about the risks that genetic genealogy testing data will be used against you by law enforcement, employers and insurers. Here again … with all due respect… the statements are overblown.
Genetic genealogy data is different from the data collected by law enforcement and processed through CODIS. We test to see how people are alike and can be grouped into families. Law enforcement tests to identify unique individuals who can be distinguished from everybody else.
Our data surely can be used, with great effort and expense, to aid in criminal investigations. But because of that great effort and expense, and because our data can’t be used directly in court (because of chain of custody issues), it’s not the easy first choice of the police. It’s only in the most serious of cases (murders, for example) where all other leads have failed that it’s even been tried.
That being said here’s a simple word of advice: if you’re worried about the police investigating you or a family member for a very serious crime, don’t test.
As far as employment and insurance are concerned, there are some legal protections– and some risks. There is a federal law prohibiting use of genetic information to discriminate in employment or health insurance. Life and long term disability insurance aren’t included.
Most genetic genealogy testing won’t be useful to show the kinds of conditions that might be a real risk for those types of insurance, and your family health history is a bigger problem in almost every case. Here again, if you’re concerned, don’t test.
The employment example in the article about the police officer who faced harassment on the job after a DNA test disclosed he had African-American ancestry is just plain silly. With all due respect, DNA testing companies aren’t responsible for co-workers who turn out to be racist idiots.
I do generally agree with the article author that it’s a pain to be forced to consent to arbitration if we do have a dispute with the testing company, rather than being allowed to sue. Again, that’s nothing new, and it’s hardly unique to DNA testing. Everybody these days is pushing for arbitration rather than litigation. Take your car in for service and, chances are, you have to agree to arbitration in the service agreement.
Calling it the “final indignity” and linking it to the risk of misuse of data, however, is — with all due respect– a bit much. It’s not the fault of the testing company that the law today pushes arbitration. Both state and federal laws are pushing it as a means of resolving disputes without clogging up the courts. Don’t like it? Change the law. Or — in this specific case — don’t test.
And I heartily agree with the author’s position that we should never just click through to agree to terms and conditions without reading and understanding them. There are some very real risks involved in DNA testing, the most cogent of which is the risk of learning something about ourselves or our families that we aren’t truly prepared for. That a parent isn’t a biological parent. That we have relatives we didn’t know about. That our cherished stories about our ethnic origins are only stories…. and not truth.
But with all due respect let’s not overstate the case. There are risks involved in any human endeavor, and each of us must decide — based on facts and not hype — whether the risks are worth it in our individual circumstances.
Excellent article.
I have never read anything Judy Russell wrote that was not excellent. A third cousin asked me if there was any reason not to do DNA, and I told him that if he thought it was possible he had children he did not know about, he might wish to think about that first.
One of the surprising reasons not to test never dawned on me until I reached out to a genetic match and found out that my email confirmed that his mother’s father was not who they thought it was, and the match (a grandson of that man) was named after him. The mother and son were in disarray, and mom had asked him to stop all further genealogy and to never tell anyone in the family what he’d found. He’d done some research and had a concern about his grandfather, but when I emailed him how I thought we might match, it confirmed his suspicion.
If you test, I’d be more worried about finding answers you don’t want to hear than worried about a broader mis-use of the results.
Yep, that’s why I emphasized that the most cogent risk in DNA testing is “the risk of learning something about ourselves or our families that we aren’t truly prepared for. That a parent isn’t a biological parent. That we have relatives we didn’t know about. That our cherished stories about our ethnic origins are only stories…. and not truth.”
It is a sensitive subject, a individual or a family discovering that their family stories are fictional. With all do respect, each of us has the right to know the truth of our roots, even if it does not feel right to others.
Great response to the subject article. It really needed to be said.
As a scientist, the article in question bothered me. Each point seemed to be twisted just a little and I found myself yelling at my computer. Judy’s response is excellent and written with the calmer voice of someone knowledgeable of the law.
Right? I find myself yelling at my computer way too often.
I think it is very telling that the author of the other article is a consumer protection litigator. I believe he may be trolling for folks that are will to sue ancestry.com or do a class action lawsuit. Good grief…if one is so concerned about their DNA for any reason, they should not test. Testing is VOLUNTARY! For genealogists DNA testing, and specifically ancestry.com DNA since it’s dB is so large now, is becoming invaluable as a wonderful cousin finder and possible explainer of past relationships. It would be very sad if the litigators found a way to turn off this avenue of research because they want to make a buck. Great article, Judy, as always.
Ancestry.com posted a new blog about “Ancestry and Your DNA” at https://blogs.ancestry.com/ancestry/2017/05/21/setting-the-record-straight-ancestry-and-your-dna/ I believe this is in response to the article Judy also responded to above.
My sentiments exactly. I tried to explain this to my daughter after she sent me the link, but Judy’s words are better! 🙂
I think this is so important, but sadly I don’t think others can envision the potential issues, both personal and societal. I’ve been pressured by relatives, ie “Why didn’t you just test with this company, everyone’s doing it and it’s much more convenient”. I can imagine the blank stares to their screens when they read that I had privacy and ownership concerns. People just don’t get it, or just don’t care (enough). I read recently that the issue for big corporations is not getting people to give away their private data, but that people are just giving away SO much of it.
Some don’t care enough, and others way too much. They fear things that really aren’t ever going to happen.
Good discussion. (Let me disclose that I know Joel, who wrote the original piece, and I have written stories for oay for Insedia, the site where he first published). Right-sizing the concern here is always very tricky, as Judy hints. Privacy folks tell disaster stories to get attention to a largely-ignored issue, then are accused of over-exaggerating, all the time. I must say that I find “just don’t do it” an unsatisfying answer. As “J” suggested up above, at some point when “everyone’s doing it,” the option to just not do it gets less and less realistic. Sure, you can stay off Facebook, but then you end up missing a lot of weddings. Sure, you can not use EasyPass, but you’ll spend an extra 20 minutes paying tolls every day. Behaviorists sometimes call this the “social cost” of privacy choices. This stuff is tricky, and often, it comes down to trusting the organizations you share with (and their partners, and future owners) to do the right thing, forever. Cold comfort. I do think these hanging questions can do real damage to exciting new technologies, and that could be the biggest risk of all.
I couldn’t agree more that it’s the future implications — especially in an uncertain political climate where things like net neutrality and privacy are readily being sacrificed on the corporate profits altar — that are the most troubling aspects. The law today is on our side, with the balance tilting towards individual protection. This Congress — and this Administration — doesn’t seem willing to keep it that way.
This comment is more significant than the entire remainder of the page. This Congress and administration cannot be trusted to do anything for the individual. Actually,I expect them to do everything possible against 99% of the individuals. Just look at the proposed budget.
I think you are reading the statement “you lose your ownership of your data after a period of years” too literally. I read that to be a cute way of saying ‘at your death.’ As in, once you die you will not be able to control your data, but Ancestry will still be around.
Then control of your data passes to your heirs.
“That being said here’s a simple word of advice: if you’re worried about the police investigating you or a family member for a very serious crime, don’t test.”
By this logic you should let state, employers, insurers look in, and use and sell your private social network data… Unless you are being investigated for serious crimes (by this logic anyone refusing access should immediately be jailed).
It would also benefit the credibility of your piece if you included a Conflict of Interest section.
I’d be happy to disclose conflicts of interest, if I had any, but I am entirely independent: I don’t have affiliate links to any DNA testing company, don’t work for any of them, don’t serve as an advisor for any of them, pay for all my own tests and testing services and for every penny of the costs of this website and blog (just ask my banker… sigh…).
Thank you for this article, Judy! I belong to a FB group where the original was posted, so I replied with your article.
Some are worried that their information may be used by a large company to make a profit. Well that is already the case. Information about you and everyone else is already sold and used to make a profit.
When clicking on your link for the article in question, apparently the New Jersey lawyer deleted his article, darn it.
He’s moved it to another website, here. I’ll update the link in the post as well.