Protecting matches’ privacy
So The Legal Genealogist is in Toronto, Canada, for the 2016 Ontario Genealogical Society Conference, and wow… more than 700 registered and very enthusiastic attendees have made this a truly wonderful conference.
My own presentations have focused on methodology and resources and ethics and ethics and ethics and…
Do you get the idea that maybe ethics is an issue these days?
It really is, for all of us, as we sometimes struggle with what we should and shouldn’t be doing, as genealogists and as genetic genealogists.
But here’s the bottom line: every ethical code throughout the entire genealogical community requires that we protect the rights of living private people to be living private people. And that expressly and explicitly includes our DNA cousins.
The newly revised Guidelines for Sharing Information With Others of the National Genealogical Society provide in part that: “genealogists and family historians consistently — respect the restrictions on sharing information that arise from the rights of another … as a living private person;” and “convey personal identifying information about living people—such as … genetic information…—only in ways that those concerned have expressly agreed to…”1
You’ll find the same guidance in the Genetic Genealogy Standards developed by an ad hoc committee of genealogists, genetic genealogists, and scientists, and formally announced last year:
Genealogists respect all limitations on reviewing and sharing DNA test results imposed at the request of the tester. For example, genealogists do not share or otherwise reveal DNA test results (beyond the tools offered by the testing company) or other personal information (name, address, or email) without the written or oral consent of the tester.2
So here’s one thing we do without thinking that violates these ethics codes: we screen-capture information from our DNA match lists — and we post it online. With the avatar — the photo of the DNA cousin that identifies that person. With a name or a screen name that does the same. And with the genetic information — the fact that the person is a match and how the person matches us — all hanging out there for anyone to see.
Now the simple fact is, when any of us takes a DNA test, we give consent for our matching information to be disclosed to our DNA cousins — to those people that we match. We have to do that, or there’s really no sense in testing at all. But the consent only goes that far: to our DNA cousins. We’re not consenting to having our DNA cousins turn around and redistribute our information to the world online.
That doesn’t mean we can’t use examples from our DNA lists or post questions online about our matches.
What it means is, we need to take a few extra seconds before we post something online to protect the privacy of our DNA cousins.
In other words… we blur the lines.
Every photo processing software we have on our computers will let us isolate a piece of information we’ve screen-captured and blur it so it can’t be read by anyone else. All of those avatars — those photos of our matches. All of the screen names. All of the “administered by” names. Anything that might identify one of our DNA matches if we don’t have permission to share it online has to be masked in some way — and blurring it is a fast and easy way.
In the image above, I have four areas that I blurred out: for the first cousin, the avatar because it was a photograph, and the screen name; for the second cousin, the initials used for this match and the name of the person who’s administering the kit. Using Photoshop and the Gaussian blur filter, it took less than a minute to do all four.
Now maybe neither of these cousins would mind if I showed their information. But I can’t know that. So unless I ask, and get permission, I have to consider that I don’t have permission to share even the fact that they are my genetic cousins.
So in the interests of their privacy, if I want to post any of their information online… blur the lines.
SOURCES
- National Genealogical Society, Guidelines for Sharing Information with Others, updated 2016, PDF (http://www.ngsgenealogy.org/ : accessed 4 June 2016). ↩
- Paragraph 8, “Standards for Obtaining, Using, and Sharing Genetic Genealogy Test Results,” Genetic Genealogy Standards (http://www.geneticgenealogystandards.com/ : accessed 4 June 2016). ↩
What is your thinking about posting GEDmatch IDs? They can lead indirectly to personally identifying information, yet everyone who uploads a kit realizes that users can compare anybody with anybody, not just their own matches.
I was thinking exactly the same thing
I personally don’t share GedMatch numbers without permission.
And what about sharing your tree with a new, fairly close cousin who is also searching?
I’d have no difficulty sharing information about the dead with anyone, but I’d be very careful about sharing information about a living person. We really do need the permission of the living person!
And for those who can’t afford Photoshop there are free programs that will erase, cover or cut the information out. Windows paint, the windows snipping tool and irfanview are three that I use. All free. Google them.
Yes, indeed, and Irfanview is my program of choice for lots of things (can’t argue with the price — it’s free!).
Wondering the same thing as Ann Turner. GEDmatch is a public site and all one has to do is register to access the information there–even if one doesn’t upload a kit.
I personally don’t share GedMatch numbers except with permission. But remember: anyone who uploads there has chosen to do so (or should have the permission of anyone whose data is uploaded there).
Hi Judy, I enjoyed your keynote at OGS and I was hoping you or someone could tell me where the blur tool is on either Paint or Powerpoint?
I don’t think there’s a blur tool with those, Lesley. What you’d do instead is use the tools built in either to scribble or paint over the name or image (Paint) or insert a shape over it (PowerPoint).
While using PowerPoint, you can insert a picture from the internet and place it over the part of your screenshot that you want to blur. Apply Fomat-Artistic Effects-Blur to the top picture. You also can just get a blurred picture from the Internet to lay on top.
That’s a lot of effort when just overlaying a plain shape will work just as well.
I think all this will be a continuing debate. Few of us will go as far as Prof. Church at Harvard and post the GPS co-ordinates of his house online, but if I can track down living people in the USA via information sleuthing, why cannot I post that on online on family trees.
You CAN do it, and probably not get sued. Whether you SHOULD do it, is the ethical question. And a practical one. If enough people get angry about having their data put online when they don’t choose to put it there, we run the very real risk of laws like we are already suffering under that have cost us access to the Social Security Death Index.
Y DNA and autosomal testing use inactive regions or junk dna that mutate rapidly. The markers are not intended to target biologically active DNA for a good reason. So this somes like a bit of theatre.
Full sequence mitochondria DNA testing is another matter.
You have to sequence the entire mDNA to get enough resolution to measure differences on a genealogically meaningful time span.
You share identical mDNA with hundreds of other relatives who have not tested or given any consent.
Full sequence mDNA does contain medical information about traits and diseases.
I don’t see this issue raised very often.
I should say this applies to Family Tree DNA. 23 And Me is taking a very different route with Genetic genealogy. Their results appear to have sensitive medical info present.