How 23andMe Sells More Than Just Your Data



Get yourself a Casper plush!: https://www.makeship.com/products/casper-longboi-plush
Go to http://functionofbeauty.com/casket to get 20% off your first order when you subscribe.
Go to http://mintmobile.com/casket to get 3 months free when you buy any 3-month Mint Mobile plan.

Welcome to the Corporate Casket, a semiweekly series where bad businesses go to die. We will discuss any and everything from bad charities, terrible CEOs, and businesses that have a lot to hide.

DNA tests are a fun way to find out your genetic history, but they create far more problems than dragging family secrets and skeletons out of the closet. The lack of privacy, security, and questionable people being permitted to buy your most personal information all make DNA testing a shady industry. You might want to think twice before spitting into those tubes.

Connect with me: https://linktr.ee/iilluminaughtii
Sources: https://justpaste.it/a1avb

Writers/Researchers/Helpers:
Ali Z-B

This episode was edited by:
Catechism: https://www.youtube.com/channel/UC1X38twKH-ePKOMQclh8a6g
&
Kelpie
&
Michael: https://www.flowcode.com/page/michaelseim
&
Collin Robinson twitter.com/CollinR027
&
Natidrovo: https://linktr.ee/NathalyIdrovo
&
The Mysterious Brian

This episode’s audio was mixed by:
@GThomasCraig

Artists:
Sprites made by https://plegberb.tumblr.com/

Outro song is Cake by Retrovision

You made it all the way to the bottom of my description box so, hello there.

#iilluminaughtii
00:00 AD
00:24 The Hooky Intro
04:09 They Want Your Genetic Data
09:55 Protecting your privacy
13:48 Lies about your health
17:38 AD
19:52 Racism around DNA Kits
24:07 Outro

source

49 thoughts on “How 23andMe Sells More Than Just Your Data”

  1. I used the health part of one of the DNA kits to prove that I had a condition I was sure I had, my doctor had diagnosed me but genetics didn't believe that it would be worth the test which meant that I couldn't get support for some things on the condition, I got to download a big file of my genetic data and painstainkly went through it myself with my mum and doctor and we found all the evidence and additional information that will now mean we have better management options for my condition. At the same time they also flagged I had the genes for celiac, it was on my record that I had been tested for celiacs (I had a tonne of celiacish symptoms, but as my patient file said I'd been tested and it was negative we had been focusing on other autoimmune conditions), when that came through, my doctor went and looked back into my patient record and found that the test had never actually been done it just marked as being done, and low and behold 3 years later (three years too late I found I am celiac), I'd already cut out a lot of gluten but going fully gluten free changed my life massively, I rarely get sick anymore and was able to start a weightloss journey too.

    I definetly see issues with dataselling but I think the fact that we are products in a hyper capitalist world is an issue in itself and I wonder if a lot of business that DO provide something important to people would be available if it wasn't for data selling, I can't expect companies just to provide services for nothing, and what it would truely cost to build some of these services with just a fee based structure, would just completely obliterate a lot of average people from being able to afford stuff.

    It's not perfect of course but I am not against it in the entirity. But I come from a country with free medical care, so it could be more of a concern in the USA where you guys have insurance etc.

    Reply
  2. The info they tell you about traits you're likely to have or recommended lifestyle changes is worth very little. It's mostly based on surveys. Linking a specific gene to a specific phenotype in a causal way is very complicated and surveys cannot take into account many sources of bias. Also, many phenotypes are a result of both genetic and environmental influences. Genes can also appear linked to certain phenotypes because people don't choose their partners randomly and not because of any real causal relationship. You might as well opt out.

    Reply
  3. I did the ancestry dba test years ago and logged into it years later and found updates and corrections as their database and knowledge expanded over the years so I like that they go back to older customers profiles and make updates and add more specifics every few years.

    Reply
  4. this is exactly what i hate. i like the idea of finding your ansectors or maybe long lost relativs but the rattail coming with it really spooks me away from this. its like GMO its a good idea and could help to develop better adapted crops for climate change but the rat tail of the cooperation inj the back… does not make it worth it which is really a shame. it could give us quiet some solutions for what is coming. Also better research in the DNA field but yeah if its a company it gonna do what it does and this is not right.

    Reply
  5. wait until you guys find out your doctors and hospitals sell information about your sicknesses and even photos of your naked bodies to scientific journals behind paywalls

    Reply
  6. No, HIPPA doesn’t protect, but it should. I’ve said elsewhere, privacy laws need to be adjusted, so that the possession of the data comes with a responsibility to safeguard.

    Reply
  7. I sat through 14 minutes and 57 seconds of your video. You did NOT talk about the HOW and WHY! This entire video should be deemed "fear mongering BS". I'm not even going to listen to your "racism" BS. Everything and anything is "racist" these days.

    Reply
  8. I will add that it's SAD that everyone listens to YOU when you never get into "how" and "why". Your target audience will choose to not question the BS you say and they will believe anything.

    Reply
  9. I've used 23andme. As you said… yeah, it's not really that good at sorting it out if you're Black. I'm Afro-Caribbean, I know where my immediate family is from but I also know that their grandparents come from other places too. Wasn't surprised to see that 23andme didn't get it right 100% though. Like… 90% from Africa, sure. 3% or so from Europe, makes sense if you think about history. And then the 1% Indigeonous or Asian – which always seems to change every time I log in. Stopped trusting it for a while when I saw a lot of people try to use it to do some scams. Now instead I just feel kinda ugh for even using it. Wish I had known that info before spending that money – had to spend wisely in college to afford that.

    Reply
  10. I stand by my initial reaction when these DNA testing kits started being advertised…a bit fat NOPE. I’ve traced back 12 generations on a free ancestry account, and while I don’t have a completely full tree I have a good amount of information, learned a lot of things about my family roots in the establishment of the United States, even found I was related to two different signers of the Declaration of Independence and shockingly share a family branch with Lizzie Borden! A good portion of my English, Irish, Scottish and German ancestors came over here from before the country was a country and some came over after. I have a German Jewish 9th gen great grandmother, never knew about that. So yeah ancestors and where we come from is interesting and the paper trail can only go so far, but I don’t feel the need to know genetic roots. One of the most interesting things was is to see how many of my ancestors lived to their 80s, 90s, and in some cases over 100 years old! Until you reach my grandparents generation, everyone started dropping like flies in their 40s and 50s, with very few making it to their 70s and only a couple made it to 80s. It’s like life expectancy actually dropped after the the 1940s. What why that is?

    Reply
  11. One concerning thing in my own family is that I have a lot of relatives who've had cancer. But, a big part of why seems to be because they were farmers and highly exposed to chemicals. My relatives who moved away from the farms are cancer free. So, what if the probability of cancer is based more on environment & diet than genetics, but since a testing company test a bunch of people from one family they draw the conclusion that it's genetic?

    Reply
  12. I know someone who realized her dad wasn’t her bio dad at 57 years old. Then realized her uncles dad wasn’t his bio dad either. Just goes to show you why some older people don’t like genetic testing. Don’t lie to your kids about who their parents are.

    Reply
  13. 2:30 but the thing is …. She wouldn't have heard it from a doctor unless it was already too late for her. And she clearly didn't think about seeing a geneticist until after she got the 23 and me results. So I think she's just complaining to complain personally.

    Reply
  14. I don't see any problem with all the issues you presented. Governments already have full access and control over our finances, as it's very hard, maybe impossible, to live off the grid using only cash. I took their test and I don't regret it. Would be nice if you assessed the lack of real freedom and privacy we have against the government and how they abuse their power. Now they want to hunt down people who fail to declare transactions as little as 600 dollars. We also have no way to opt out of their "welfare system" and stop paying taxes and using public schools and hospitals. They are the biggest scammers because they are the power, but nobody questions a thing.

    Reply
  15. 2:50 it's worth noting that 23andMe specifically warn their customers before showing details of genes which affect particularly scary diseases, including the one mentioned here. There's also a disclaimer that medical advice should be sought from a doctor instead of taking the DNA result as a diagnosis. This happens regardless of whether you have the gene or not. The lady would have had to click "Yes, I want to see this" before being shown that.

    Reply
  16. One reason I was prepared to use a DNA testing kit was that I got arrested a few years ago (mistaken identity – I didn't commit a crime) and had a DNA sample taken by the police, so it's already "out there" and open to exploitation by the government, so I wanted to get tested so I had some of the info on me that the police already had. I also wanted to find out if I was a carrier for anything which might manifest in my granddaughter, who was a fetus at the time. I realise it's not that complete or reliable but it got more so.

    Reply
  17. I feel like it ties right into the obsession that Americans have with race and ethnicity. The identity is so tied to ancestors in many parts. There are people calling themselves German, Irish, french, Spanish and so on when their great-great-greatgrandfather came from there.
    The European countries actually think that's quite silly honestly.

    As for crimes. I know that it was once used in Sweden to find a criminal through those methods, but it was decided to not do it again even though it was successful.

    Reply
  18. This is exactly why I have never done one of these tests before. I love genetics so I absolutely would love to, but I don't want my data to be out there and I'm always worried what people will do with it. Call me paranoid but πŸ€·β€β™€οΈ That's a bit too private to me.

    Reply
  19. My brother and I are both adopted. We came from the same agency but share no DNA. A couple of years ago he did the Ancestry DNA test and posted the results publicly on Ancestry. His DNA found a match (an uncle on his bio dad's side) and his half-sister reached out. Yup, he found his birth family. I'm like "nope". I'm not purposely putting my DNA out there for all the world to see and use for whatever purpose they want. Should I ever decide I want to track down the origins of my birth, I'll do it the old-fashioned way.

    My brother actually called me when he was first notified to get my thoughts and feelings on this before he responded. I was like "look, legally I'm your sister and our parents are the people who raised us. It's not like you can divorce me. I'll always be your sister. It's not something I'm going to do, but I have no problem with you doing it. Just do your research and make sure this is accurate info." Our parents are both deceased so no issues there. Personally I think it's kinda a slap in the face to adoptive parents, especially since I know first hand what our parents went through to BE parents.

    Reply
  20. Someone just shared an article with me yesterday from ProPublica about how Google has been petitioning the DOD for access to stuff they absolutely should not have access to, like information regarding tumor samples from veterans. ProPublica actually caught the Google rep admitting they didn't want the media finding out they were doing that…which that isn't necessarily directly linked to the problems with these companies, but it does tell us that places who have absolutely no business with this information are trying to get it. There may be policy protections in place now for that particular info, but how long will that last? Has the policy been quietly broken already? We have no way to know.

    Reply

Leave a Comment