What's the current thinking on commercial DNA databases re privacy?

May 13, 2021 12:02 PM

A relative who is conducting some genealogical research has asked if I'd be willing to submit a DNA sample. I'm not entirely opposed, but have some privacy concerns.

I seem to recall some shady stuff with respect to some of the DNA databases such as sharing DNA information with law enforcement, some LDS Church stuff, and so on. Wondering what the current thinking is about such things these days. Would it be possible for my relative could submit my sample tied to a fake name so only he would know it was me? Or would that be overkill? Or might that possibly complicate things for me if I wanted my database information actually tied to my real name?

I am not without curiosity about my paternal lineage, which can only be traced through records to around 1825 (to be clear, my relative isn't part of this lineage). I'd like to say yes, but I also have a healthy concern about The Man. Any advice or perspectives would be helpful in deciding how to respond.

posted by slkinsey to Law & Government (15 answers total)

We both did the Ancestry.com tests a few years ago, but then started hearing about the privacy issues related to testing (and the resultant data). We opted to have the results deleted/nuked/erased, and are trusting that it's occurred. It doesn't look to have gotten much better since then, though some providers are better (or worse) than others.
posted by jquinby at 12:20 PM on May 13, 2021 [1 favorite]

As an addendum - I sort of ended up the de facto genealogist for my family. As soon as word got out that I was doing a bit of research, everyone dumped their in-progress trees on me. It turns out you can do a pretty good job with some of the online services (I was using Ancestry.com). The monthly costs are high for reasonable access, but I tend to do it in fits and starts, cancelling and renewing as required. If you're interested in doing some family history searching, you might give that a go - you can be as open or private with your work as you'd like, which is useful.
posted by jquinby at 12:23 PM on May 13, 2021

Depending where you live some public library systems have free access to Ancestry.com services, though they almost always have to be accessed in person in a branch location.
posted by Captain_Science at 12:41 PM on May 13, 2021 [1 favorite]

I did my sister’s under a fake name and an email address unassociated with anything so I could see the relatives she has more in common with than I do. I wish I had known to do that with me. I have only done mine (and hers) at Ancestry, some of the other ones are pretty clear about releasing or selling data.

In the end, once it is out there, it might be hard to get rid of.
posted by ugf at 12:59 PM on May 13, 2021 [1 favorite]

DNA data, once submitted, is out there. Out there being the wild west of use/lawenforcement. At some point, the data will be out there. Someone will build a database that includes known DNA that contextualizes any other pieces of data and then sell it to someone else. Does CPD have a DNA database of people of interest? Who knows! Unregulated areas are exploited.

Further, if a database company goes bankrupt, can just anyone buy the company and data? Probably, yes.

At the beginning, consider the end.
posted by zerobyproxy at 1:19 PM on May 13, 2021 [4 favorites]

Maybe I am misguided, but my concern is with my relatives submitting their DNA. I can be traced to them. Sort of gives them control over my privacy.
posted by AugustWest at 1:30 PM on May 13, 2021 [5 favorites]

Consider your degree of confidence in various futures of various probabilities with various political entities in power. If the data is there, what is going to keep it private?

See also: facial recognition software.
posted by amtho at 1:45 PM on May 13, 2021

Do you have (biological) children or plans to have them? Keep in mind that your decision affects their genetic privacy too (potentially without their meaningful consent).
posted by unknowncommand at 2:04 PM on May 13, 2021

I figured once my relatives had already signed up, it was too late for me to maintain privacy.
posted by jenfullmoon at 2:48 PM on May 13, 2021

I am the de facto genealogist/family historian for my family. I've tested my DNA at all of the major companies and have asked multiple relatives to test for me, which helps me test various lines and target new areas of research. I, personally, have no concerns. It is possible to test with a fake name and email address and there would be no way to link it to you. Even if you have future relatives that test in the future, all they would be able to see is that a 1st/2nd/4th/8th, etc cousin with an unfamiliar name is a match, and would have no way to know it's you. That's the best case for your privacy, though I hope you would respond if close relatives message you asking for more information because you might be the key to unlocking a line for them.
posted by Nickel at 3:06 PM on May 13, 2021

Depending where you live some public library systems have free access to Ancestry.com services, though they almost always have to be accessed in person in a branch location.
There have been some exceptions to this during the pandemic, so it's worth checking your local library website.
posted by bluedaisy at 3:51 PM on May 13, 2021

Best answer: I am a privacy lawyer (insert required "I am not your privacy lawyer'").

I am also black.

No DNA sharing over here.
posted by simonelikenina at 5:30 PM on May 13, 2021 [8 favorites]

If I had any privacy concerns, I wouldn't do it. Even with a fake name they could still use it to figure out more in the context of relations. The more points of interpolation, the easier to tie it to you. Unfortunately your relatives might make that a moot point.
posted by wnissen at 2:29 PM on May 14, 2021

PBS NOVA this season has an episode on this. For now, employers and health insurance companies cannot legally use that information. I repeat: FOR NOW. Laws can change at any point. Life insurance companies can use it, though.
posted by Neekee at 3:15 PM on May 15, 2021

This just in / updated:
https://www.rte.ie/brainstorm/2020/1109/1176888-dna-tests-genetics-privacy-family/
posted by BobTheScientist at 6:20 AM on May 21, 2021