The privacy-invading, junk science "home DNA test" industry is cratering

Originally published at: https://boingboing.net/2020/01/27/to-opt-out-dont-have-genes.html

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Well, that didn’t take long.

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I’ve gotten both a 23andme and an Ancestry test, although I did it several years ago and I don’t think I would do it now that they seem to be more willing to let the police use the databases for whatever, that’s pretty creepy. For what its worth, the ancestry part of it was quite accurate, but I’d already done the genealogy work to know that it was accurate, so I didn’t learn anything I didn’t already know. For me the most value came from connecting with cousins to compare genealogy work. It’s only worth it if you’re really into genealogy and you want to get through some research “brick walls”. I’m sure they’ve probably saturated the market of genealogy hobbyists.

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Junk science or not whereas ancestry is concerned, the broad brush you paint both these companies and those who would give them genetic information is a bit unfair in my estimation.

I was adopted as part of a closed adoption, the records for which will be released only 100 years after the adoption was finalized. Without these “junk science” tests I wouldn’t have solved the mystery of my origin story, met a full brother also put up for adoption, or had a more complete medical history.

Maybe I care less because I don’t (and will not) have children - but some second cousin’s genetic fears certainly don’t outweigh my own concerns.

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I agree, I also did the 23andme test, when they were getting started and was much more expensive, and it matched our “junk” family genealogical records with even some branches from the year 800 very accurately, even more so, considering that we are hispanics and the native american, african and european ancestries were depicted as expected. I gave it a shot thinking it would be an American-centric report, but it wasn’t, and was positively surprised. We have met some distant cousins from all over the continent, and included in our genealogical tree too.

Granted, I don’t like the privacy record of these companies (I don’t have social network accounts, but I guess the boingboing store will get some information from this post), and the rushed out health reports were of some concern too. But at least they worked toward better and approved health reports. Also, they matched my “junk” medical reports from the local health providers.

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Aye, I also have a more complete medical history (and a depressing one at that) thanks to my father doing a DNA test and discovering his assumed biodad was in fact not the same as his biosisters… Instead it was an older gentleman from down the street that she babysat for.
Certainly gave us a more accurate picture of why he was put up for adoption, that’s for sure…

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Get yours now from store.boingboing.net

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I too found the Ancestry one to be very useful, and even more so afterward once they allowed you to download the raw genome data. I have my genome on file to do whatever I want with it. Before Promethease got bought, I paid the 5 bucks to generate a report on what the latest studies showed the various genes were associated with. Super cool! Again, it told me a lot of stuff I already knew (I am going to get SO MUCH CANCER, and also my beard is weirdly red).

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Certainly the willingness of these companies to share their results with the authorities regardless of the will of their customers is disturbing, and that is a valid reason why people may not want such a test. But it isn’t “junk science”. Ethnicity/ancestry and health risks really are reflected in your DNA and it is worth knowing these things. That being said, the current providers merely provide a small snapshot of common variants (called SNPs) rather than actual DNA sequencing. I think there would be a market for a provider than both respected privacy of the customer and actually provided full genomic sequencing (which isn’t as prohibitive in cost as it once was).

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I wonder who will buy the collected data once these companies go bankrupt… Maybe health insurance companies?

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So what happens to the data when one of these companies folds? I’d imagine a lot of parties would love to get their hands on it.

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The junk science end of it is in medical predictions and the x% of is from this nation. Usually presented as definitive. 23andMe makes predictions about your sleep quality. And in terms of the geneology it doesn’t really work quite like that, accurate reporting of that sort of thing would be probabilities of origin in various regions.

So as an example my mom’s got a lack of info about her side of the family, particularly because of some serious estrangement with her biological father’s side of the family. So we ran a 23andMe test on her and her mom.

Her results came back something like 34% Irish, 22% French, then like 10% each Belgian and Norwegian, the rest being a mix of different small percentages of other North European countries.

Now that clashes as reported with family records which indicate almost entirely French and Belgian, with a great grandparent that was rumored to be Polish.

But genetically it doesn’t really change much. As I understand it the populations in that section of Northern Europe are pretty much genetically indistinguishable. Certain markers might be more common in particular areas or modern nations, but that doesn’t mean they don’t exist elsewhere. Just taking Ireland as an example you had heavy settlement by the Norse, English colonization, immigration from Scotland, the Normans who were french invading. All mixed together over millenia. And since the test can’t really tell you when those markers came into play it can’t definitively tell you that a recent ancestor came from Ireland.

What you can say is that since it’s a high percentage, and those markers are most common in Ireland. You’re more likely to find a recent ancestor from Ireland than elsewhere. But if that doesn’t pan out you might find a recent ancestor in the next most common place, and so on.

It’s a bit useless in that sense without the genealogical records to back it up and confirm, so all it can really do is narrow down where to look when you’ve got a gap. And that’s the big reason Ancestry and the genealogy sites are getting so popular, they’ve got the established tools and records to make use of the info.

We did the 23andMe because at the time they had the more comprehensive testing, and you could pull the raw data. Though Ancestry has caught up. The next steps involve uploading that raw data to a genealogy site, and/or dumping it into research software to look for much more granular markers. Apparently there are genes that are very tightly associated with specific populations. So if you’re carrying some of those you can get some much more specific places and times to look. Or something definitive enough to be meaningful where documentation doesn’t exist.

The health stuff is kinda the same thing. If you don’t have a medical history. It’s important to know if you’re carrying genes for certain genetic disorders, or high probability markers for risk. But weight loss advice based on generics is utter bullshit at the moment.

There’s real utility in this stuff, but its presented and sold as a sort of one stop shop for easy answers. Preying on a lot of misconceptions about how DNA works. A bunch of them have started laying in epigenetics nonsense more based in alt med magic than anything we actually know about epigenetics too. There’s a whole lot of buyer beware context that these companies just won’t give you. Cause “we’ll tell you where your from and how to fix your health” is a better sales pitch than “this is a first step in a lot of hard work, that’s only neccisary if conventional means fail.”

The big case that brought all this to people’s attention was the Golden State Killer. But the coverage seems to have created a misconception. In that case and the others like it the companies didn’t share information with authouries.

What police did there and in similar cases is run a profile on physical evidence from a crime scene, suspected of being from the killer. Then they just uploaded it to a genealogy matching service just like any other user. That found potential relatives for the suspect profile, and they followed up on that by interviewing those people for leads.

China is definitely on a “let is see all the DNA” kick, just like every kind of personal data. And there are broad problems with privacy and security with these services. Including insufficient blinding on profiles submitted for research, and the fact that much of that is opt out.

But the specific thing that’s got everyone geeked out isn’t that. It’s authorities checking publicly available records people have deliberately put out there. Less equivalent to Police getting access to your Facebook account, than Police looking at your public Facebook postings.

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The last stop on the gene grift is to sell their datasets to the highest bidder - which will amount to pennies on the dollar.

I have not looked at my 23andMe in a long time, but I got mine done way back before they had their arguement with the FDA about the health reports and I think they stopped doing them for awhile. At least at that time, they tried to be really clear about how those predictions were made and what they meant and what they didn’t mean (ie, this doesn’t mean you specifically are 50% more likely to get cancer than someone else) but I imagine the average user skipped right over all that and headed straight to the oncologist/vitamin aisle/Goop.

They seem to have gone the other way. Currently advertise on podcasts based on the more bullshitty tests. All worded very carefully “find out if you’re prone to sleep problems!”, lots of fine print about what the FDA approved medical tests do and do not mean. They’re hardly the worst in the market on that front, and they’re still fundementally selling these tests to fund and create a huge research database. And very upfront about that, last I checked they were opt in on the research stuff.

But it’s part and parcel of the inaccurate presentation of these things. These tests aren’t bullshit, but most companies forefront a bunch of bull to generate sales. The genealogy companies seem to be less bullshit forward. As their pitch is still about their tools, document database and ability to connect people to find info. With DNA as a tool they have.

My wife and her brother took the Ancestry test, as did their grandmother who had been raised believing she had Indian ancestry. It came back that she didn’t. She’s 94, and disappointed.

I know my wife and her brother recently received updated results, and now my wife has a much lower percentage of Swedish ancestry in her DNA than they originally said she had. In spite of her working on their family tree for decades and tracking down numerous Swedish relatives starting with both of her great grandparents on her mother’s side.

I pointed out that them changing the results either means their science was faulty in the first place, is faulty now, or is all a bullshit con game.

It’s not clear how companies could keep the data from getting to the authorities even if they wanted to since police departments can just make a new account under a bogus name, send in a DNA sample cultivated from a crime scene and then get a list of possible genetic relations. They’ve already identified at least a few cold case suspects this way.

This! Not only did they share the data with police, they will monetise their database to the highest bidder. Even if I had been sure the results were super accurate, I still would not have sent them DNA because of the certainty of missuse I expected. Besides, I already know that I am decemdant of sexy royalty so what’s the point…

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Still pretty glad I did 23andMe, I’ve found it nothing but fascinating. Was quite interested to learn that apparently I’m about 9% West Asian (Middle Eastern), through my Mom’s side (Italy, mostly). I had no idea about that, and it’s cool!

Also, I have never felt they are making clear-cut statements about propensity for things like getting a good night’s sleep (which they are totally correct about in my case – I am a light sleeper to say the least). They are saying there is a statistical correlation between people with certain similarities in genetics, and these various things. It’s not an exact science nor is it described as such.

I’m also not really concerned that the police can get a warrant for these records. They can go to my garbage any day of the week, pull any one of a hundred things out of it, and have my DNA. They can find a hair of mine anywhere I frequent, and have my DNA. shrug

Oh, and how is this supposedly tied to “eugenics” as Cory says? Uhm… yeah. OK. Not sure what that’s all about. It’s called “genetics,” not “eugenics.” Is there something I’m missing, and 23andMe is rounding up some of their customers and either sterilizing them, or throwing them in gas ovens? Because many of us have family that have died as a direct result of, oh I dunno, ACTUAL eugenics, and to my mind, calling 23andMe “eugenics” is maybe a tad belittling. As in, give me a break.

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image

But also:

https://store.boingboing.net/sales/embark-dog-dna-test-kit

Costs more than twice as much as the human test, but it allows you to “discover your dogʼs relatives & connect w/ them.” :smile:

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