DNA: the privacy sky is not falling

Chill out!!

Okay, step back, take a deep breath, and chill out.

Yes, genetic genealogy has taken it on the chin this week with lots of news stories that make it sound as though taking a DNA test to find out information about your family is the functional equivalent of posting the password to your bank account online.

(a) It ain’t such a parade of horribles as the news articles makes it sound, and

(b) You’re putting more — and more personal — information than that online every day, so

(c) Just what are you worried about anyway?

Let’s go through these one by one.

The news articles are reporting on the fact that a team of scientists managed to identify by name people who’ve taken DNA tests and who’ve allowed their results to be included in various study databases. The databases generally include an individual’s gender, age and area (state, usually) of residence. The scientists identified specific markers in Y-DNA, identified a likely surname from publicly available genetic genealogy databases and then used other public databases to locate likely candidates of the right age, surname and geographic area.1

Now the combination of factors that has to be true for someone to be identified here is pretty substantial. You have to be male (women don’t have the specific DNA type used for this), you have to have donated your DNA test results to a public database, that database has to include your age and your state of residence, your DNA has to match DNA in a publicly-accessible genetic genealogy database and your surname has to be the same as that of the others whose DNA is in that database. Oh, and then you have to confirm that it’s you when the researchers contact you about it.

Somehow this doesn’t quite strike me as requiring the “the sky is falling” reporting we’ve seen in the past 48 hours. And it most assuredly does not require the “nobody should ever do DNA testing for genealogy” knee-jerk response we’re seeing either.

In the first place, most people who do genetic genealogy testing aren’t also dumping their test results into public databases — and that’s necessary for this privacy issue to arise. None of the testing companies we use day to day — AncestryDNA, FamilyTree DNA and 23 and Me — makes its genetic genealogy data available for public research with any identifying information (age, location, etc.) without our consent. So this just isn’t the threat the popular media is making it out to be.

Now let’s talk about what information you’re putting online already. Chances are pretty good that you have a Facebook account. If you do, and you’re my Facebook friend, I probably know your full name, your spouse’s name, your kids’ names, how old the family members are, where at least your college age kids go to school, where you live, your pets’ names, the last time you went to the doctor, deaths in your extended family and maybe even what you had for breakfast.

I know what trips you’ve taken, what trips you’re planning to take, if you’ve had car trouble, what the weather’s been like, whether you’ve recently given up your land line in favor of a cellphone and a whole lot about your politics, your religion and your sexual preferences.

Now multiply that by what tweets you retweet, what you post on Google+, what you’ve pinned on Pinterest and the list of often highly personal data that we all share publicly all the time in this day of social media.

And we’re genealogists, for crying’ out loud. We post our parents’ names, birthdates, birthplaces, their parents and so on back to Adam if we can. We’re not shrinking lilies hiding in the background — every last one of us is hoping that long lost second (or third or fourth) cousin finds us with all the cousin bait we throw out in public.

And you’re worried about someone finding out who you are from your DNA???

Why? Just what are you afraid of? Big bad government gonna come take you to jail? Um… Not unless you’ve committed some crime lately you haven’t bothered telling us about. (And they won’t be getting your DNA from genetic genealogy sites if they’re investigating you for a crime.2)

Me, I’m with Harvard geneticist George Church. His position is that we simply tell people the truth when we ask them to DNA test and we all grow up and deal with the consequences.3

So I repeat: let’s all step back, take a deep breath, and chill out.

The sky is not falling.


 
SOURCES

  1. See Gina Kolata, Web Hunt for DNA Sequences Leaves Privacy Compromised,” The New York Times, online, posted 17 Jan 2013 (http://www.nytimes.com : accessed 19 Jan 2013).
  2. See Judy G. Russell, “DNA and paranoia,” The Legal Genealogist, posted 11 Jan 2012 (http://legalgenealogist.com/blog : accessed 19 Jan 2013.)
  3. See Eryn Brown, “Geneticist on DNA privacy: Make it so people don’t care,” Los Angeles Times online, posted 18 Jan 2013 (http://www.latimes.com : accessed 19 Jan 2013).
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19 Responses to DNA: the privacy sky is not falling

  1. Judy,
    As always thank you for your level headed commentary. Loved the photo too!
    Kelly

  2. Jeff says:

    >Somehow this doesn’t quite strike me as requiring the “the sky is falling” reporting we’ve seen in the past 48 hours.

    You may know that. I may know that, in part, because I read this post about it. But tell that to the “uninitiated!” To them, the sky is indeed falling or has already fallen. It just makes the “job” of someone trying to get one of the “uninitiated” to take a DNA test even harder.

    • Maggie says:

      Yes, I’m just hoping my father sends off the testing kit before he reads all the hoopla in the media! (Ack, does that make me an awful daughter??)

      • Judy G. Russell says:

        No, Maggie — it makes you a good genealogist. Just make sure he understands that the hoopla is just hoopla, and you’re just fine.

    • Judy G. Russell says:

      Which is why we all need to work on educating people, Jeff.

  3. Jill Morelli says:

    And lucky me, I had a DNA consult with a client yesterday and this was obviously the topic of conversation. Thanks for the level headed approach (as always). I remain concerned, however, that those of us that take the time to learn the truth are not in the majority. I hope this won’t be viewed as yet another reason to close access to records. [Judy: I really liked the phrase "cousin bait"!]

    • Judy G. Russell says:

      The medical community has never wanted genetic genealogy DNA testing, since it doesn’t go through a medical professional. If these sorts of stories become more common, we may see more states going the way of Maryland (which doesn’t permit 23andMe to sell to MD residents).

    • Judy G. Russell says:

      Jill, I’ve just been reminded of the person who’s likely the first one to use that phrase “cousin bait” — it was Randy Seaver.

  4. JoF says:

    You really know all that about me, Judy? Gee whiz!

    This is what I posted on FB re Roberta’s take on the same subject. I’m not clever enough to write it any better.

    23andMe has me with a greater than average predisposition to 7 diseases/conditions. I am 69 and have never had signs of any of them. Nor have any of my relatives to my knowledge. OTOH, I seem not predisposed to the diseases/conditions I have had or those which I’ve seen on both sides of my family. The ‘traits’ listed are also not a very good match. I do not have “curlier than average” hair, mine is stick straight. So, there are 2 problems here: 1) not everything is known yet about genetic influences and 2) a genetic disposition is not necessarily a guarantee a disease/condition will develop. I suspect insurers and doctors know these things. I hope the genetic genealogy community will endeavor to educate the press/media as much as possible. They tend to be ignorant about most of what they report on. Science is and has been a great source of knowledge but I have long felt that young scientists should be forced to live in the real world for an extended period of time and older scientists should have to experience refresher sojourns. Call it “continuing education”! This could be very helpful in guiding their research toward studies which are of value and could save us all a lot of tax money. As for the press, my father was a newspaperman and even back 40 or more years ago he was complaining that the press made a crisis out of everything. I think that was about the time I decided not to allow other people to manipulate me by fear. I’ve never been sorry about that decision.

    • howard robinson says:

      the biggest crime is the money that was stolen from me by the dna lab.
      Oh they got matches on both sides probably 100 or so and I’ve wasted
      my time writing to each one ….only about ABOUT three even answered
      me. Even though I’ve go the 17 th most common name not one name they
      gave me is robinson. … What is needed is an
      internaional database like the f.b.i has for fingerprints. I spent $300
      and I haven’t found one useful fact. That’s the crime !

    • Judy G. Russell says:

      “I decided not to allow other people to manipulate me by fear.”

      I think that needs repeating, Jo!

      • JoF says:

        Howard: I think the dna lab only promised to analyse your specimen. Matches are dependent on the luck of the draw, how many of our relatives have tested. I’m not a very lucky person so I didn’t expect much and I was not disappointed. What I got was not much! Still, I figure the lab does the analysis. Understanding it is and using it up to me. So I study, join a few groups/projects, and hope that in the future, more matches will appear.

        Judy: Thanks. This was one of my life changing decisions. I keep hearing people say, “Oh, I would be too afraid to _______.” I find myself wondering what they are so afraid of. I do recognize reasons for fear but so often folks seem to fall in the habit of over-reacting. I tell myself, “Back off. Think about this for a while. Analyze the situation. Use caution but don’t embrace unreasonable fear.” As for the problem of manipulation, I find a genealogical attitude is helpful. Who is providing this “info”. Does this person know what s/he is talking about? What is the evidence that the sky is falling? My father, the newspaperman, always told me, “Don’t believe what someone says just because of who the person is.” He always wanted me to assess the info against my own experience and to find other sources to see if they agreed with the first person. I think that has helped me with handling fear and also with genealogy.

  5. Somehow I missed all the hoopla in the news, so I wasn’t at all afraid about the Orwellian state rounding people up because of their DNA results. And now, after reading your post, I’m even less afraid. ; ))

    I like your sensible perspective. Thanks!

    Here’s my rule for tweeting, blogging, commenting, and Facebook-ing: I don’t put anything in writing that I wouldn’t be willing to shout from the rooftops. (Well, I guess that’s back in the day when rooftops were more accessible. But all the same.)

    • Judy G. Russell says:

      That’s pretty much my view of it, too, Mariann! If you don’t want people to know about your DNA (and to tell you they match you), why bother testing?

  6. Kathleen says:

    I didn’t hear about any of this, except for genealogy blogs online proclaiming that it was nothing to worry about, so I wasn’t worried in the first place. But I just (this weekend) got my grandfather to agree to take a DNA test, which surprised me – he’s inclined to be skeptical of the internet/providing information about himself anyway. I’m just afraid that he’ll hear something about this before I can get back there to get him tested next week, and will back out.

    • Judy G. Russell says:

      If he does get a little hinky about it, Kathleen, remember that you do NOT have to use his real name in the testing, and offer to submit it under initials with your email contact information. That has usually worked for me.

  7. Carl Oehmann says:

    What are the ethical issues in using living peoples names either in a scholarly article published in a journal or simply in a note attached to a tree one might publish on Ancestry.com. Specific example: You are providing DNA evidence to help prove your relationship to a grandparent and you mention autosomal matches for several 2nd cousins that have tested. Assume each person has provided their full names on the testing site. My thought is that I should contact each for permission but would it be unethical to use their names and match results without asking?

    • Judy G. Russell says:

      I absolutely agree that you should have the permission of those folks before using their names. And yes, I believe it would be unethical, certainly unethical under the code I’m sworn to follow for the Board for Certification of Genealogists, which requires me to “keep confidential any personal or genealogical information given to me, unless I receive written consent to the contrary.” A quick note to the person asking if you can use the info, once or for all time, handles the issue. Or don’t use the person’s name and make darned sure you’re not disclosing personal identifiers in using the data.

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