What’s the best/least sketchy DNA testing kit?
November 22, 2021 9:56 AM   Subscribe

My boyfriend wants an ancestry DNA test as a gift. I kinda want to try one too (I’m more interested in the medical data side of things though) but I am a little sketched out about privacy concerns. What’s the best DNA testing kit these days? How concerning is what they do with your data?

We live in Canada so it’s not going to affect our health insurance costs or anything like that. I’m just nervous about handing over such sensitive data to a corporation.
posted by vanitas to Technology (15 answers total) 3 users marked this as a favorite
 
Honestly, it doesn't really matter what the privacy policies say today. The companies and all their data could get sold during bankruptcy proceedings to a holding company next week that wants to monetize it any way they can. So you kind of have to make your peace with the fact that the data will be out there and you can't control how it will be used. It might become part of a dataset that is used to develop a cancer treatment tomorrow. It might be used to provide DNA evidence to put your grandkid in prison in 50 years.

A more immediate concern imho, is the danger that you, someone you love, or someone you've never met, might find out they aren't related to the people they thought they were related to, and even if that isn't you, you very well might end up getting messages from strangers saying "hey this thing says we're cousins can you help me figure this out" that you now need to decide what to do with.

I bought a DNA testing kit forever ago because I wanted the ancestry and health data. And I'm glad I did it. But it's not a decision to take lightly, and I wouldn't recommend it as a gift. You might turn someone's life upside down, and I wouldn't want that cloud hanging over my head in a relationship.
posted by Jairus at 10:45 AM on November 22, 2021 [10 favorites]


For genealogy, If I didn't care about privacy I'd go with Ancestry DNA; they have a very good consumer product. For health concerns I was a 23AndMe customer but was never very impressed with what the reports could tell me, even in the pre-FDA-lockdown days. There are also specialty products for people from various ethnic backgrounds, particularly African-Americans. I don't know much about them except they are popular.

But the privacy concern made me regret ever participating. It's not just healthcare discrimination. Or family surprises, like Jairus alludes too. It's also police overmatching. In the US, some DNA databases have been used to go fishing for crime suspects (particularly GEDMatch and Family Tree DNA). The risk isn't just to your boyfriend but anyone in his remote family, too. Even if no one in the family ever commits a crime it's possible that a DNA match will finger someone as a possible suspect and make everyone's life miserable. I believe all the examples of police cooperation have been voluntary so far but there have been many stories of the police trying to force companies to give up data. I do not know the story in Canada.

I cancelled my 23AndMe account and did the most I could to have them delete my data — not all of it even can be deleted. Quick searches online about Ancestry DNA provide no clear answer on how safe your data is from police overreach.

In theory you have some privacy options. Many of the services don't particularly verify the identity of the DNA sample, you can probably give a fake name. Also in theory all you need are the SNP files from your sequence, not the elaborate web service that keeps your records forever. There are tools for matching SNPs yourself but I imagine that is all pretty difficult.
posted by Nelson at 10:49 AM on November 22, 2021 [5 favorites]


I haven't looked at the privacy policies or signup process for one of these tests for a while, but isn't it possible to use fake personal information? Do they require you to have some sort of ID proof of who you are? That may be one route of using the system but not having the information connected to the "real" you.
posted by _DB_ at 11:19 AM on November 22, 2021


(The information can be very easily connected to the real you if other people in your family have used or end up using the service, due to the nature of DNA.)
posted by Jairus at 11:22 AM on November 22, 2021 [9 favorites]


Yeah I’m a hard “no” on this too. The keys to the kingdom of your entire sovereign bodily being in the world, and a unique identifier of incredible power, are just too valuable to risk or sign away. If you want genetic testing for legitimate health reasons, at least do it with a medical testing outfit and proper privacy protocols in place, and in consultation with a doctor or genetic counselor. And as far as the ethnic ancestry pursuit, it’s mostly fantasy anyway.
posted by spitbull at 11:47 AM on November 22, 2021 [1 favorite]


Here's a NYT article on protecting your DNA and/or identity. I used Ancestry and was happy with the experience.

I've sent the "hey this thing says we're cousins, can you help me figure this out?" message btw. I've also been the person who made discoveries. Am I shocked that my biological grandmother had an affair while her husband was in the South Pacific during the war and conceived my father? Absolutely not.

Anyway, you're in charge of how much you want to know, or share. I didn't do a health profile because I don't want to know. Similarly, you can choose whether you want to take part in the DNA family tree, and if you do, you can also choose to be anonymous within that tree. If you don't want to risk finding anything out, you don't have to. You can just get your DNA profile and
posted by DarlingBri at 11:58 AM on November 22, 2021 [1 favorite]


Consumer-grade products are not useful for clinical (medical) interpretation. It is probably going to be more useful to you to visit a genetic counselor to ask about testing for specific medical reasons, such as risk for inheritable diseases (e.g., Huntington's chorea, Ashkenazi Jewish genetic diseases, etc.).

However, consumer tests can be interesting for measuring and comparing broader aspects of your genome over larger populations, even if they will not tell you much that is medically applicable. If you're into the technical side of things, there are open source software projects like OSGenome, Genetic Origins Heatmap, and 2vcf (among many others) that will let you work with your data locally.

I’m just nervous about handing over such sensitive data to a corporation.

As well you should be. Private third parties will claim they can anonymize and protect genetic testing data, but research has shown that variants can be tracked back to individuals after anonymization steps. Genomics companies can be bought and resold specifically for monetizing the intellectual property derived from variant data that they collect, and the ownership of personal data and responsibilities to protect that data can get nebulous.

Giving a fake name probably won't help much if you're paying for testing with a credit card, etc. A visit to a genetic counselor may also help clarify your rights here, which are specific to Canadian law.
posted by They sucked his brains out! at 12:02 PM on November 22, 2021 [1 favorite]


DNA Testing and Privacy (Behind the scenes at the 23andMe Lab) - Smarter Every Day 176 - YouTube. Otherwise, sorta meh, we have a family historian with most of the ancestry stuff already.
posted by zengargoyle at 2:08 PM on November 22, 2021


I only know 23andMe, but I understand they are generally thought of as the most advanced on the medical side, and there is really nothing useful there. When you dive into the details, none of the reports they give you are meaningful. Maybe in some rare cases, you'd find out something that might be actually useful to you, but mostly it's just very broad claims about minor things that end up being based on very little. They test only a very small number of variants that might be relevant to any particular question, so there just isn't enough information there. Not worth it at all from the medical angle, in my experience.
posted by ssg at 4:22 PM on November 22, 2021


Family surprises via DNA testing aren't always a terrible thing. A cousin discovered he had an unknown half-sister via ancestry matching + a bit of web searching. Turns out my 90-year-old aunt had an out-of-wedlock child in the mid-1950s and traveled out of state to have the baby, which was taken and given up for adoption immediately with full secrecy about its destination, as the practice was back then. The half-sister had been searching for her biological parents for years, and my aunt was ecstatic to discover her after six decades. Amazingly they both lived in the same city, about five miles apart, though each had moved from there different US states hundreds of miles away. They both have whole new families now that have happily accepted their new relatives. (Granted this is a best-case scenario.)
posted by Creosote at 5:03 PM on November 22, 2021 [3 favorites]


Creosote's best case scenario also happened for me - my new 15-year-older half-sibling is lovely and we are all so glad to have met. But, the DNA testing on our end was undertaken by folks who knew they were looking for their adopted-out kid / adoptive parents, so even though it was a surprise to me it wasn't one to the people in the marriages.
posted by Lady Li at 7:59 PM on November 22, 2021


Anyway, if you ARE looking for relatives I recommend 23andme or Ancestry, ideally both. I still haven't done one myself though.
posted by Lady Li at 8:00 PM on November 22, 2021


Argh, I came here to recommend the National Genographic Project, but it looks like they've discontinued it. It's the only one I was willing to do, because while it would not tell you that you're 3% Lithuanian and 1% goldendoodle, or find your parent's secret other family, it was truly anonymous. (You bought a kit with a serial number, sent the sample in identified only by that number, and saw your results by looking up the number. Even if they could trace who paid for the kit, there would be no way of knowing whose DNA was sent in.) I'd say "some company should start using that model!" but I expect they like having people's info....
posted by LadyOscar at 8:48 PM on November 22, 2021


23ANDME HORROR STORIES: THE DNA TESTS THAT TORE FAMILIES APART

I will note that I did AncestryDNA after a relative bought it for me as a gift--I figured that once my close relatives were on it, my privacy was already gone anyway and I was curious. So far it's just found hundreds of 3rd-6th cousins and no surprise relatives, which actually disappoints me. I just wanted to note (a) that story I just found and (b) if you already have close relatives on there, I dunno on keeping yourself private any more.
posted by jenfullmoon at 8:00 AM on November 23, 2021


A couple years ago when I got a test from 23andme, I didn't have to provide personal identification. They ask for it, but you can leave it blank or enter false information. Don't use an email address that ties to the rest of your life. Create a new email address just for 23andme, then make it forward to your real account. To pay for the test, use a virtual one-time use credit card number.
posted by conrad53 at 4:36 PM on November 27, 2021


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