The reason they only need 0.02% of your DNA is because that's the stuff that varies from human to human. All humans share 99.98% identical DNA. The reason they only work with that 0.02% is just for minimizing file sizes by focusing only on the variable parts. That 0.02% contains all the relevant information anyone with sufficient technology would need to know everything about your genetics. It's just a matter of file formatting. It's like if you're giving directions to someone. You don't give every single turn along the way. You just say "you know how to get downtown from here? Okay. Do that, but take a left instead of a right on Sycamore." Or "you know what a generic reference human genome looks like? Okay, do that, but these 600,000 sites are different."
I'm tempted to get a full genome sequence (Well, I've wanted to for ages), then get a genotype done, and see how close I can get to my original genome by merging the genotype with a random human genome downloaded online.
@@arcadiomushi1955 Basically the idea is that if you did a full sequence on 1000 people, they'd all share nearly all of their genes (99.98%). If you take the stuff that's identical in all of them, you could call that the human template. All you need to go from a totally generic, human template, to you, is that extra 0.02% that 23&me collects, called your genotype. If I had a copy of your genotype, even though it's only 0.02% of your full DNA, (and some other random human's genome) I could recreate near perfectly 100% of your dna. A puzzle with a million pieces, and there's only one piece that's different from each human. You have that one piece, that's enough.
Windows XP is radically less secure than Windows 10. It's so outdated it's almost laughable that this company is trusting the genetic information of its customers to that OS. It should honestly be criminal or a violation of HIPAA medical privacy and security rules.
+Jacksirrom AFAIU the problem is that specialized biomedical software or drivers for the super-expensive equipment are often no longer updated to be compatible with a newer OS. "Never change a running system" is bad for security but often the only affordable choice. I'd guess that criminalizing the users first is probably a bad approach (it'd basically allow manufacturers to charge horrendous sums for new updates). My bet would be on creating data I/O and format standards in the industry (cf. "plug &play" USB drives, monitors, keyboards...), or forcing a company to release the source code when they stop releasing updates?
I've got a BSc in Genetics so thought I'd explain a bit more on how significant that small percentage of DNA they take is and also add some extra interesting facts, including why we're still not really using genetics much in medicine (which I believe ties into the third party scientists mention of the "nuances of human genetics"). :) Firstly, while I'm not paranoid about it, what they mentioned on genotyping and how little info they take - that small percentage is actually not as safe and insignificant as you might imagine. This is because the vast majority of your DNA is made of repetitive "non-coding" sequences. As an example one single type of repetitive sequence, called the ALU sequence, makes up about 10% of your DNA - this is more than all the "coding" elements put together! When you look at how much of your DNA is coding data it's actually a very small amount, so they'd actually be collecting a substantial amount of info on what makes you uniquely you, and this *could* still be used to identify you! While I say this though, the interesting fact is that in things like paternity tests, they actually don't use any coding data! They use the pattern of the non-coding elements - so in a paternity test they ironically identify the father from DNA that doesn't specifically code for the father or the child! You may be wondering why there's so much non-coding DNA - interestingly they used to call this "junk DNA" as they knew it didn't make proteins and thought it was waste left over from evolution. They actually used to remove this on early cloned animals, but through that they realised it's not actually "junk" (if you look up Dolly the sheep, one reason she actually got really ill because they removed her "junk" DNA). This is actually used - amongst other things - to promote/inhibit/control what parts of the genome are expressed. This is known as epigenetics (which also has a lot of other areas, not just this - it's truly fascinating!), and that's one of the new big areas of genetic research. With epigenetics, we now know that even the coding parts don't specifically code for who you are as there are further controls and some of it is never even used! That is why for most genes they don't say "You have X gene so you'll get X illness" - they only say a % as your body may or may not use those genes in ways that cause that illness. ...also this is different for every cell in the body as they're all pretty much independent. If you want to read anything even more fascinating you should look into the human microbiome - which is how they actually think the DNA of organisms inhabiting out body could have even more impact on things like health than our own genome through (genetic) symbiosis! The total bacteria inside you have potentially 100s of times more genetics data that you do, so if there is symbiosis there you can get how relevant that is - essentially they're an extension of your genome! ...worth remembering that next time you're prescribed a broad spectrum antibiotic (which basically aims to kill all internal bacteria!!). With epigenetics and the human microbiome though, hopefully that shows why so little genetic info is still used in medicine and diagnostics. DNA is not the simple blueprint of life we thought it was 20-30 years ago, so it's not a straight tool that can be used for diagnosis - it more shows you potentially how healthy or sick you *could* be, rather than what you *will* be.
Carlos Alemán Dyer while that's true, it's not affected other clones that have also been cloned from adult cells as now they include non coding regions. The exclusion of non coding regions meant there was less control of gene expression, which led to extreme levels of inflammation. That's why Dolly had extreme arthritis by the time she was about 2. A far as the shortened telomeres, there's an enzyme called telomerase that extends these. This means it wouldn't have passed to Dolly. The cells that were chosen were also taken from a fairly young sheep and were compared to many others to choose cells that hadn't lost much genetic information from telomeric shortening, so it's unlikely it played a huge role in her illness. It's all relative though so it could have still contributed.
Tad Springer I'm not inventing stuff up you can do a research and find that they where studies on telomere and telomerase as early 1994, but the activation of the telomerase was not use in Dolly. Activation, because the telomerase is inactive in mammals. For Dolly they not only clone 1 sheep but 3 and compared the length of the telomeres between them, 2 of them were the same and1 was different because the age difference of the donnor. So yes the fact that Dolly age quickly and had health problems is because of the shorter telomeres (Here is a simple bibliography: Blasco, M et al.; Telomere and telomerase; Genes and development 1999, 13 Xu J., Yang, X; Will cloned animals suffer premature aging - The story at the end of clone chromosomes; Reproductive biology and Endocrinology; 1; 105; 2003 Shiels P. Et al; Analysis of telomere length in Dolly, a sheep derived by nuclear transfer; Cloning; 1(2),2004; 119-125)
The Privacy issue is with the collected data not the discarded sample. What does 23andMe do with the collected data do they sell it share it do more research? Does the government have access to this information.
The big concern here is less the government and more health insurance companies. I can imagine they'd love to start increasing rates or denying coverage for people based on genetic predisposition for certain diseases. And I don't exactly trust the people in Congress and the White House to make sane, well-informed decisions with regards to legal issues like that.
I like how people act as if spitting in a tube is the only way your dna would ever leave your body or be easily accessible to someone who wants to collect samples.
Lift Pizzas and they act like people can just "create a virus to kill only you" because they don't understand dna. What these companies do it look at your genes, they can't just change your dna to make some virus. The closest thing we have to gene modification isn't even 100% accurate at all and will take YEARS to be even close to what we want from it. People need to stop fearmongering others and grow up
While you're right that if someone wants to target you specifically, they can get a sample with a fairly good chance of no contamination. But realize 23andme also asks a ton of questions, and is a bigger target for large scale DNA profiling (insurance rates, etc). Not saying it will happen, but be aware it's not the same.
Lift Pizzas in big data business the real challenge is sourcing large volumes of clean, labelled, structured data. So while random dna is everywhere, carefully collected, labelled dna samples are not. People submitting their dna to companies like this gives them the massive opportunity to mine and resell that data.
_PhilfreezeCH_ I believe Turdeau was saying blacks, mexicans, and arabs are genetically predisposed to having an IQ below 100. As a sort of trend. They were not saying without a doubt ALL surely do.
I will NOT help China develop a genetic bio weapon to kill everyone but Chinese dna. Obviously the genetic data goes somewhere... C'mon if your that naïve
I was concerned about what actually happens with my genetic information when submitted to 23andMe, so when they approached me and asked me if I wanted to make a video I decided to investigate it top to bottom. Visiting the Lab and learning that their data is contractually isolated from the sample and the fact that it's not the entire DNA sequence being sent to 23andMe headquarters passed my smell test and satisfied my privacy concerns. My wife spoke with professors and industry leaders from around the country and learned about the benefits of a future of medicine based on genomics. My wife, Dr. Lamb, and 23andMe all independently stressed the importance of understanding exactly what the results of the health genotype testing mean by consulting your (well informed) doctor. In a nutshell, the results don't provide deterministic results, but a probablistic indicator based on historical data. Many other factors play a huge role in how your body works.
My biggest concern with 23 & Me and the others, is that they refuse to give "forever" privacy on your data. This is made worse by the fact that they won't let you submit DNA "anonymously". (ie, we give them money and a return address, that's all) The issue here is that insurance and or anyone else has access to the IMPORTANT gene sequences. Things like genetic propensity of your genes for things like cardiac problems, Alzheimer's, etc. You know, things that cost insurance companies money, and make you a bad insurance risk. YEs, they don't share the info NOW, but they refuse to put "forever" in the privacy policy.
With respect, you're wrong on every point. You can achieve the "forever" condition by choosing to destroy your sample and the data. I investigated every concern you just brought up (because they were also my concerns) and checked out every counterpoint and validated each one either with my own eyes or a third party. You can delete the data and I saw samples destroyed with my own eyes. You also don't have to provide a return address. Insurance doesn't have access to the data, in fact there are several laws about this. EDIT: 23andMe read this comment and asked me to add this clarification: You can have your sample discarded after a 6 month processing time. Your account can be closed, at which point your information will be removed from your account, but some information may need to be retained to comply with lab quality regulations, such as CLIA.
he made a joke that they dont actually throw away the samples afterwards but that was it unfortunately. either he is getting paid a ton for this or he is just clueless on the real privacy issues that are at stake
joshGerbwrecked I think if possible we can start by referring to their terms and conditions. Like whether or not they will give the information to the government if the government told them to.
@@joshG1513 1. With whom might 23andme share my results? 2. Can I be compelled to disclose health results for purposes such as employment or insurance rating? for starters.
Got a kit, but the privacy concern is still nagging at me so I started to search for reviews and came across this, among other videos. This video actually made me really hesitant about consenting and sending my saliva in. Questions were softball and Destin went in like he's already part of the 23andme team, like he's there to debunk all your concerns, and not to find out if there is anything you should be concerned about. Many people brought up the fact that you actually gave them your entire DNA, but they're the one that chose not to use the entire thing. Destin showed how the saliva samples are tossed but not the digital info that they already logged in. He said Tara went and spoke with different researchers and professors all over the country and discussed the benefits and risks of doing this type of testing both on the individual level and its overall implications for society... but all that's shown in the video is her key takeaway, that optional questions are the key for scientists to find out what genotypes affect what traits, and they, as a family, want to contribute to the body of knowledge (5:41). At 12:49 she said she feels the benefits outweighs the risks (did not explain what the risks are), and that the information is helpful for the society as a whole as well as the individual. I feel like Tara's part is very weak, no actual discussion with researchers were shown, basically we'll just have to take her word for it. No wonder he had to say he didn't take money for this, because this does look like an ad for 23andme.
Well now. How do you feel now, 2 years later, and knowing that 23andMe is about to sell everyone's DNA data off to the highest bidder? Bet you're glad you didn't listen to the hype. (:
They should have said something like "you're only giving a really small part of your entire DNA, ***however the part they take represents the most unique parts of your DNA, which is why they take those***". The privacy concerns are very much relevant and the argument used to reject those concerns - it's just a tiny bit of your DNA! - is not valid.
Anthony Khodanian yes, but the other 99.998% of your DNA is pretty much the same as all other humans, so if they had the technology to clone someone from a complete genome, they could probably clone you from that little bit of your unique DNA combined with the rest of the DNA shared with all other humans
There are 3 million differences between human genomes and according to Destin's video, 23&Me tests for 697615 markers which is still only about 23.25% of your unique genetic makeup. So this argument isn't entirely valid
@@jackfiercetree5205 sure you could iteratively go through every possible combination but it would be extremely prohibitive, even with advanced chess playing AI
I did my DNA through Ancestry and then ran it through a health program called Prometheuse. I did it because everyone in my family dies of cancer, and I wanted to see if it said I was genetically predisposed. Well, guess what? It came back and said I have the BRCA-1 gene mutation, the gene that gives you a 70% chance of breast cancer and 40% chance of ovarian cancer and a high risk of other cancers. I was so upset. I grieved, I obsessively researched, I cried.... it was terrible. Then I went to my gynecologist to discuss my options. She redid the test just to be sure, and 2 months later.... it came back negative. Turns out I never had the BRCA-1 gene mutation; Prometheuse just told me I did. I spent 3 months of my life freaking out and telling my family to get tested... It was rough. So user beware when you get your results back! :(
I'm not sure if it's true, but I've heard people say that if your insurance company knows that you're genetically predisposed to a certain disease, they can deny you coverage. This was before the health care laws changed, but it's still something to consider before getting tested.
What is done with the digital information gathered by 23&Me and the labs? They trash the samples when people don't want them to be stored, but they've read the DNA already and stored that information digitally, I'm sure. Is that also destroyed?
I would try reading the 23andMe privacy guidelines. I bet somewhere there's something that says "This information, if you choose to have it destroyed, will not only be physically destroyed, but our system will also delete this information after X amount of days/years." I mean, I can't imagine they'd be able to afford saving all that data on their servers for too long.
@@vjm3 well... This is genotyping so it's looking at .02% of the genome, and the full genome on the other system was about 80GB... If my head math is correct that would make the multiplication come to .016GB but even then that's too much because each of those 600,000 genes was simplified by reading off a binary Gene type from the final base pair. In the end they wound up with 600,000 bits of information, which would make for a miniscule file size. I'd say that this falls into the category of so little file space it costs less to keep it forever than to deal with the logistics of knowing whether to get rid of it or not. People are forgetting they have to save the data so you can access it...
I know this is 6 years old now... But with current data breaches have shown that they indeed do store and use data. And with how the genome works not only your DNA but also the genome of close family members have been leaked and sold online. Would love a follow up from Destin on this. Especially how he feels about these services after this incident.
It’s never been a secret that they store data lol. People’s relatives profiles were compiled, which consist of names, ancestry compositions, cities etc. pretty basic stuff.
Unfortunately, there's still some uncertainty around the legal implications of knowing various genetic testing results. To their credit, they clearly outline the risks in their Terms of Service: "While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, its protection against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life, long-term care, or disability insurance providers." ... "If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud." Yikes! It's also unclear how much information they associate with your account. They definitely ask for your full name and date of birth, although I suppose you do not have to provide real details. I do wonder if they store the address a particular barcoded tube was shipped to, which is harder to conceal if you are concerned about your privacy. They do sell kits in stores, but you still have to pay a separate lab fee through their website when you submit your sample, making it hard to have a truly anonymous 23andme account. The bit about .02% of your DNA being analyzed is a bit misleading. If you go back and look at that bookshelf, there is a binder labelled "exome," which contains only the coding regions of DNA, and accounts for about 1% of human DNA. 0.02% is still a lot smaller than 1%, but the vast majority of your DNA is identical to others (even other animals), so a relatively small number of SNPs could tell you a lot about a person. I am also curious about what kind of data they give you if you are truly curious. The FDA has finally allowed them to disclose some health information, but there are certain categories of health information that they cannot give out. However, I have heard that you can download the raw SNP data and interpret the results yourself?
"Yikes!" Yikes indeed. This is one of multiple reasons why, for the time being, my doctors and I have agreed that not pursuing a confirmation of Ehlers-Danlos with a geneticist, and keeping it off my files, is the best route to go. There are some clinical reasons as well(treatment & monitoring isn't affected, ignorance by healthcare professionals makes it borderline-useless anyway, etc), but the concern that I may be screwed in areas like life insurance or future holes that get poked in federal protections is definitely one of the bigger reasons that have come up. It's really sad that issues like this alter the clinical suggestions of medical professionals, and that we have to tip-toe around it until it becomes absolutely necessary to be recorded on paper.
Gwen C HIPPA gives you the right to with-hold this info. Even in records, I work in a medical facility; for Labcorps in fact (once PAML) and some of that data is retricted depending on what it is. We have three sections that I can come to a conclusion with. The insurance company, the billing provider and the medical facility where the doctor is.
I love the LED accents on the sequencing machine. Like, you didn't have to... but it's a million dollar machine and you went that little bit out of your way to make it look futuristic and sciencey.
Moron, did you not watch the video??? They don't ever get you name, your data is strictly linked to an email account simply in order to send you the data. YES you certainly can go to their site and share more information, including name, DOB etc. but that's often more for people interested in geneology. You can protect yourself using a throwaway edress if you're that paranoid.
You're not covering what happens to the Health + Ancestry Service samples or where that data is then used after you get your results. My biggest problem with this service is what they discovery in your DNA (for good or bad) can be used with any compensation to the individual because they signed those rights over to 23andMe. Read the fine print, I did. As for the physical samples be being destroyed, that should not even be an issue, the "spit" is like the plastic bottle your soda comes in as the data has be collected and is now in the system and is for sale and has been sold already to pfizer or other companies. Don't get me wrong, I'm all for the betterment, but I have to draw the line when it comes to a company making money twice.
Just curious, I dont mean to be confrontational or anything, but can you maybe just paste the fine print you found? Im just curious and would like to also see what, how, where, etc.
Tara, thank you for being willing to be on camera to share this, and for your important points. Both my husband and I are adopted, and I am planning to do the genotyping for both us and our two kids because we are lacking even the family stories that might give us hints. (So...at least we don't have to decide whether to share with our wider families!) Destin, thank you for asking them for the concessions you did, for getting a 3rd party to discuss the details of the system, and for making this video to share with us all. It is really nice to have more information about a company I'm planning to use sometime this year.
I am afraid this video is misleading and irresponsible. 1. any number of markers are unique to an individual. Thus, 600,000 markers will uniquely identify you. And 2. this data is being sold (like the purchases made by GSK for $300,000,000 and other companies) - our data is being monetized and distributed without our consent, putting us at risk of genetic discrimination, if it gets out to employers and life and health insurers. There are no guarantees for our privacy, given that our data is already sold and 23nMe is constantly asking their users for more and more personal information.
100% agree. And your selling all your family data in the same time. Maybe even your cousins. Juste remember that the CEO of 23 and me is the ex-wife of Google co-founder. That says a lot.
Alright let's assume they do sell our dna information(it probably is), how is that bad? What's the point of privacy if they scan only a certain parts of dna and you probably share that part with a lot of people? That was a bad question tbh but I'm really curious why do you find it wrong
Funny, I have an acct on 23andme and it doesn't constantly ask me for anything other than to suggest health surveys I might be intersting in answering multiple choice questions about- those surveys are voluntary and can be turned off in preferences.
The 0.02% thing seems a little bit of a misleading statistic. While it is true that is the overall percentage of your DNA, it is slightly misleading in that its not necessarily the percentage of your DNA that matters. Consider how much of our DNA is shared with a Banana (~50%) or a chimpanzee (~99%). Then consider that a not insignificant portion of our DNA is considered to be non-coding or junk DNA. All that put together could make the percentage of your DNA that they are testing for out of your total DNA that matters a good bit larger. I am far enough from an expert to not know even within orders of magnitude what that final percentage would be, but it would almost certainly be higher than the 0.02% stated. That said, that doesn't scare me off of testing services like 23&me so much as not seeing it as a good value at its current price. Thanks for the video!
People often forget this fact. The U.S government will bully any company into giving them your information if that company wants to stay in the good graces of good old capitilism.
So you shouldn't let yourself be put on the grid in any form, since courts can order disclosure of ANY information. Have fun living in a cabin in the woods without electricity, bank account, auto, job, internet, etc.
Philip Webb Ha, you seem to be the one paranoid. Never once did I mention not to sign up for anything as that would be impossible. I merely pointed out that fact. If you have nothing to hide right.... I'm all for civil conversation but one of my pet peeves is having to argue a point I didn't make. I hope I cleared this up for you. Have a great life.
@@weirdworld3874 OR, you can enjoy the other option which is to ignore the fact that undetected murderers are walking among us that could be arrested. Which do you choose to sacrifice: your privacy or your safety.
09/07/2017 - "We won't sell your information. We value privacy." 07/24/2018 - "We're partnering with GSK to share genetic information in return for a $300M investment." 02/09/2021 - "We're merging with VG Acquisitions to allow public investment." And this is why some people never trusted them to begin with. But hey, you can still "opt out" right? At least until the new board may change their mind about certain policies.
IamaDave, this caught my eye as well as knowing the evaporative permeability of saliva into the atmosphere, why aren't they wearing masks for their own protection?
Usually the vial has solution inside it that destroys bacteria and preserve the DNA. The lab of such huge company should be strict enough with the cleanliness standards.
I literally poated my sample off to 23 and Me an hour before this video landed :) I was adopted from birth and have absolutely no idea about my heritage or any genetic predispisotions. I'm looking forward to the results. Now finally I can answer my doctors questions ''do you have a history of xyzabc in your family'', and finally I can have an idea about my genetic roots and where I'm from.
I was a bit surprised to see at 8:15 that the technician that is de-capping the saliva samples before testing them is actually talking over all the un-capped samples without any sort of mouth cover, potentially contaminating the samples. Anyone else thought about that?
Any resulting contamination from breathing over a sample is negligible. The worst possible scenario for contamination would be for the technician to actually spit in the original sample, which would result in (potentially) different reads for the same location. This the concept of coverage in sequencing, in order to ensure there are correct matches: en.wikipedia.org/wiki/Coverage_(genetics)
Wow. One of the reasons I haven't used a service like 23&me is that I was worried about the reliability and accuracy of the results. This has allayed many of my concerns. Thanks for going the extra mile on this one.
I love this. I have questioned creators who have been sponsored by 23 and me but also were in support of individual privacy. Great video and great subject matter. Can't believe this is 3 years old and I'm just seeing this I've been subbed for awhile.
This was great, I actually did 23andme not too long it gave back pretty accurate results and some surprising stuff. Nice to know they are a very credible company
People are mostly concerned about the details of their health and medical history. They don't want to risk it being exploited. There's a buch of other comments explaining this.
Not to be paranoid, but just to be more clear: You are giving WHOLE of your genome, but they say that they use only specific parts (0.02%?) of it. Please correct me if I am wrong, @SmarterEveryDay
the method they're using only reads for specific parts, it takes an entirely different method (video implies a far more complex and costly one) to map the whole thing
I do understand that. But there are two things: - For specific people, they may send the sample to another lab. - I do not think the visit was a surprise visit.It seemed like a planned one. Understandable, but ...
I'm actually studying for laborant, and I can tell you, the samples you get are just labeled with the barcode, you don't get to see any names. also this only requires your email address. you don't have to say your name. the way they work in the video is actually how the work is in real life. so yes this may be a planned visit, but on the other hand I can confirm this is the daily way of handling stuff at the lab.
" For specific people, they may send the sample to another lab." The lab that does the testing doesn't have information of which sample belongs to who, as he said, the lab has a number and a sample, while 23andme has a number and an email
I don't care about the sample, what happens to the actual data? How long is it stored? What's stopping them from selling it to an insurance company? Even if they super duper pinky swear not to what's stopping them from changing their mind some years down the line? This video does exactly nothing to address my privacy concerns.
"My wife insisted on taking my place, for reasons she will explain herself." Fully expected her to say "I need a day off from looking after the baby. I'm outta here!"
Dear Destin, THANK YOU for contributing to the betterment of our class discussion in my Biology Brainiacs course today at Dale County High School in Midland City, Alabama! We have been learning the finer points of DNA and Genetics for a week now and have just begun talking about DNA testing and its' future. We have a local cold murder case that has gone viral in the news so the kids have had a lot of questions about DNA testing such as that done with 23 and Me and how those would relate to possible forensics cases. My husband subs to your channel and was showing me your channel at 4:30 this morning when I stumbled across this gem of a video. I had the pleasure of working with Dr. Lamb several summers ago and just adore the way he allowed you to tell the proper story of DNA testing in a lab setting so THANK YOU for being such an integral part of my lesson today! In True Nerd Love, Crystal M. Newsom and the Biology Brainiacs of DCHS
I sure do hope you approached this video with scepticism and discussed the privacy concerns. Otherwise you just left a bunch of kids misinformed and encouraged to donate their genetic profile for others profit at their own risk.
This is awesome! It makes me want to contact these specific companies and let them know how thankful I am for them being so transparent! It’s such an important thing!
okay, yes, they are only looking at 0.02% right now. look at the fine print. their terms of service allow them to keep your sample indefinitely. there is nothing stopping them from deciding to fully sequence your DNA in the future. not to mention only a small part of your genome is actually useful information, and there is a huge section of the human genome that is not only not unique to the individual, but not even unique to the human species. That's not a privacy selling point, that's just a point in favor of actually getting a medical test done instead, since you can learn a lot more that way.
Privacy IS an issue because the tests do not allow for anonymity. Setting aside the shipping address, the only billing options are Paypal and credit card. Both leave an identifiable digital footprint. Further, the data is stored permanently (whether the physical sample is or not) and can be vulnerable, now or in the future, to hackers, employers, health insurers, and the US government's Combined DNA Index System (CODIS). I know that not many people take privacy seriously anyway, but these companies could include bitcoin and/or cash payments options, and the ability to pick up kits (stocked or pre-ordered) at someplace like affiliated drug stores and pharmacies. But I'm sure that's not practical simply to cater to a niche portion of the market :)
Buy a prepaid credit card with cash. Use a fake name and temp email address for the DNA thing and have it sent to a friend/neighbor's address. Nothing is linked directly to you.
@@Jaden-s7x Those kits are only valid for US residents and only provide for the ancestry analysis. The health upgrade still requires payment via paypal or credit card. Lmaoooo
Well, there are many theories that they store your dna so that they can come up to you and say “you are susceptible to this disease” and then try to sell you a specific medication that will “help” you. I’m skeptical of this theory, but it does make sense. But it is pretty crazy that the ceo of this company is married to a family member of the ceo of Google. Kinda freaky.
I dunno man this whole thing seems sketchy. The guys promoting the product and every comment seems to be along the lines of “I wasn’t sure about it before but now I’m definitely going to get it done!” I’m out.
(14:20) Psalm 139:15-16 New International Version (NIV) 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
Dear destin, Thank you so much for the effort you put into making these interesting videos. Recently, India celebrated teachers day, and I want to wish you the same because you have been a great teacher to me. PS: I wish I could get a high speed camera to do what you do
Being someone who is approaching their final year of an undergrad genetics degree this is like the absolute thing ever! Being able to see the theory and basics I've been learning actually applied in the real world. Thank you so much for the amazing content and making me smarter every day! Greetings from South Africa
Thanks Destin for the due diligence! And well done Tara! My concern is that health insurance companies and life insurance companies can ask you if you have ever taken these tests. If you refuse to answer they can deny coverage. If you answer yes, they can ask what the results were and base your premiums on your predispositions.
My main concerns: privacy; or sharing the information they obtain with the government. It’s great imo if it’s used to find suspects in crimes like they did in Iowa with Michelle martinkos case. That I can see as beneficial. I also see it being beneficial to know your dna and what you’re predisposed to... BUT that’s where it gets most scary to me. If they share the info with insurance agencies and such, the insurance agencies can start to up prices based on your DNA. Not to mention, eventually if this progresses farther I can see something like gattaca becoming all too possible. That’s where the concerns lie with me, not what they do with it after it’s disposed of. It’s what THEY do with the info that they obtain.
Destins a smart guy, surely he realizes that there's a still a privacy concern associated with giving up a DNA sample, even if they say they're only extracting a very small fraction of the information held there, seems fishy.
Psalm 139: 15-16 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
Came to the comments for this. How did you even see it??? There's preview boxes for other videos covering it, and even turning off annotations, they don't disappear.
Thats what I was wondering, even if theres a film on top to prevent sample from contamination. All the skin, spit, etc from that woman could be resting on top as the extractor needle punctures it to take a sample.
DNA testing is one of most tricky pieces of the new medical puzzle right now. Real medical decisions can be made from these kinds of tests. One of the most common is the risk for a woman to develop ovarian cancer. Yes... knowing this risk is great! The issue comes in is what is done with this information. If you have XYZ genetic markers, would an insurance company refuse to cover you, or charge you obnoxious premiums simply because you have a marker that increased your risk of X? What other decisions can be made if your genetic markers display other things? Having been in the lab industry, I've been a part of many conversations about just how dangerously deep that information COULD be used (everything from prenatal decision making to excluding populations of people because of one genetic trait). It's a huge ethical question mark in the medical world right now and one we need to be cautious of. I AM curious if 23 and Me actively keeps their data between you, Labcorp, and them or if they sell it to other organizations. Not necessarily with personally identifiable information (which would be a HUGE violation of HIPAA), but for their samples as a whole.
This is really cool. Great video, and amazing that your sponsor gave you such freedom. They saw an opportunity to market a service that they have confidence in and you were able to ask critical questions. Kudos to you both.
can someone explain why so many people in the comments are scared of the anonymity? what is gonna happen even if someone stole it or it went public? "HA i see your natural hair color is brown, yet you have red, you must be coloring it!" what does it matter?
As a medical student, i'm not sure about the .02% that are analysed. I think 23andMe analyses ~600.000 sites in your DNA in which each site includes several bases. So I think it is much more bases that are analysed than only .02%. As for the health data, it would be interested to know, what 23andMe does if they find out there is a genetic disorder that can lead to a genetic disease, for exemple SNP (single nucleotid polymorphism) and bigger rearrangement (like micro duplication or micro deletion). In these kind of test, whe should be told what we can expect from it and what we can't. Sorry if my english was bad, I'm not a native English speaker. Great video as always
Julien Janet they do analyze way more than the health reports they are allowed to give you. You can download your 23andMe report and have the whole thing analyzed for $5 at Promethease.com.
I agree with many of the commenters here that the big question of data storage and privacy was completely ignored in this video, but I think the PhD in the beginning was misleading when he said that only 600,000 points are read by 23 and me. Because first of all, those 600,000 points aren’t just 1 base pair( 1 letter) they are like to be multiples, perphaps even long chains, coding for specific proteins so 600,000 may be very low number. Secondly the entire genome still has to be sequenced, and then put in order, so as to determine the location of specific codons of interest? So they must sequence the entire genome, but throw away the 99.8% that is common to all humans
I totally agree with you and the points you bring up about the significance of those 600,000 sequences and how misleading the video was, but actually they don't have to sequence the whole genome. They use that artificial DNA Destin was talking about to match up with specific points of interest, so they only have to test for those, not sequence the whole genome.
Bro for real no one should care about YOUR health and Ancestry then you so they arent trying to Monopolize you or control your body. They want to provide proper protection for you i.e. specific medication or treatments, specific to you.
Super awesome of 23 and me to work with you on!! That’s really reassuring!! Despite you not being a journalist or news outlet it’s people like you who are truly doing real investigations of things and letting the public know! Thank you so much!!
Hey, here's an idea, WHY DON'T YOU GO TO THEIR WEBSITE AND READ THEIR DATA POLICY??? It says right on there that they absolutely promise not to share your personal DNA AS LINKED TO YOU PERSONALLY to any entity period!! 23andMe states right up front that they will share certain information necessary for medical/scientific research, BUT IT IS ANONYMOUS, as in NONE of your personal data is attached, so there's no way it can be traced to you. And to date the cooperation they've given law enforcement has been to compare a DNA sample from a crime scene to their database to find matches or to find potential family members in order to try and identify the suspect. Those potential family members are then contacted and a request for their cooperation is made (and kept confidential from the public, btw).
@@shekharmaela2308 WTF does allowing tours (which they have also done several times for different news agencies who're covering the issue) have to do with anyone's privacy????? Seriously, do you think that someone walking by can somehow telepathically pick up on personal data??? I don't understand why you people always jump to negative conclusions about a process you have no knowledge of at all!!! When your sample comes in, your personal data is entered into their secure and highly encrypted data base WHICH IS TOTALLY SEPARATE from everything else, NONE OF IT follows the sample out to where it's tested - the only link is a totally ANONYMOUS NUMBER, so that even the technicians and scientist can't tell anything about the sample they're working on. After all the work is done, the results are then linked back to the user's profile for access BY THE OWNER. The company only uses the ANONYMIZED DATA (IOW, no names/SSN/ or other identifying info) in order to sequence it and then use in specific studies. THAT IS if you allow them to, which you are specifically asked permission for when you sign up. Seriously, you're acting like a child frightened by the boogeyman simply because you either don't know enough, or are just overly suspicious and don't trust anyone, only you know which one that is.
This is the best video i've seen on this matter tbh. Great investigation and explanation from you and your wife as well as all the people in the lab. Thanks to everyone!
This needs to be a longer video... With much more information... More about the machines, more about the sites useful, how are other biological organisms removed from the as samples, what it the cost difference between full and partial genotyping.... Etc
Sir Meow The Library Cat its in reference to the institute in fallout 4... stop trying to pretend to be clever, because clever people don't need to reassure themselves in RUclips
I know this is an old video, but it popped up again recently. I am quite concerned that they still use Windows XP (at time=8:26). They're probably going to end up getting hacked and a massive DNA data dump will soon be found online.
The more important question is what they do with the data. As far as I can tell they sell your data to other companies/organizations and who knows what will happen with it (the data, not the sample) in the future. Unfortunately this question was brushed over. Who cares if they only analyse .02% of the complete genome if those .02% are the only interesting parts of our dna. We share 99% of the genome with chimps, more with other humans, so it's only a tiny fraction of our dna that would be interesting to look at, and that is of course what they are doing. (Saving the saliva samples would be to extract even more data in the future when other interesting parts of the dna are discovered, interesting to the buyers that is).
InqWiper that is the kind of question that would have been nice if he had brought up in the video. Can the samples be tied to an individual, and if not how can they guarantee that? I suspect that is hard to check since all the data is likely being processed by networked computers, so only a handful of people actually knows which bits end up where. But on the other hand, they might have set things up in a clever way to make that easy to verify. Who knows. I'm not claiming they are doing anything nefarious, but the video didn't deal with any of the real problems with this. Destin claims it was transparent and that he would investigate any big concerns which he did not, that seems deceitful to me and certainly doesn't instil any confidence in this. He didn't even show the real processing of the samples which apparently involved conveyor belts (based on what the lab tech said) and probably is a lot more automated process.
because the sample undergoes multiplication before being put on the chip, small contamination doesn't matter. As long as you have "pure enough" sample it will give correct fluorescence, because there are more "correct" matches than those with contaminant.
It damages your credibility when you take money from the company you're investigating. I felt like some important questions were missed; where is the data stored, what is done with the data after analysis, and how will they protect the data from misuse? This video raised more questions for me personally, and makes me even more hesitant.
If you're insinuating that windows XP is a better operating system than one of the newer ones then this is just false, as recent ransomware attacks on XP systems has shown. Windows XP is no longer supported with security updates and so it's a very bad idea for any company to still be running on it. Sounds to me like you are the one who 'knows absolutely nothing about computers'.
Relax kids, the computers run on Windows XP for driver/software/hardware compatibility. These computers aren't connected to the internet so how does one get attacked by ransomware. Companies shouldn't be stupid enough to know that lol. If they are that stupid then they deserve to face the consequences. Edit: I'd like to think and hope that they aren't connected internet, I could be wrong.
So what exactly do you expect to happen if hackers get into a computer controlling a lab automation robot? Worst they can do is to invalidate the samples or maybe damage the robot. This is entirely the lab's own issue, and there is no point to even care about it.
The cross contamination going on in that lab with the girl speaking over open tubes, the hair flopping around not to mention touching every tube with the same pair of gloves wouldn't be acceptable in basic food prep or any allied health field let alone sampling unique DNA. What a joke!
i love how it look that every 5 years old could do their job. open a box. scan. then open bottle. place it in the machine. toss bottles in trash. wow so hardcore
Yeah the moment I saw that it made me question if any of these people are even qualified. How can they claim to do accurate DNA analysis when they don't even understand the basic scientific premise of contamination, this dumb lady was spitting all over everyones DNA samples- Like I don't even understand how this was allowed to happen, it's basic scientific practice...
@@jeanbiroute they're contaminating the labspace, that's the issue. It's an invalid sample if two DNA types are detected, and they're still invalidating the samples she's speaking over and wasting people's time, spit and money. Ps: My lab technique is flawless.
@@grumpyaustralian6631 Speaking over it will do nothing. There's no contamination what so ever. She can even sneeze over it it won't change a thing. The tube would still be filled with 99,99999999% of the clients saliva. This isn't like chemistry.
Can you deep dive the way the analyze the ancestry data? I've heard very mixed things about it and how their sample data doesn't scientifically give them the level of certainty that they imply with their reports to customers.
The reason they only need 0.02% of your DNA is because that's the stuff that varies from human to human. All humans share 99.98% identical DNA. The reason they only work with that 0.02% is just for minimizing file sizes by focusing only on the variable parts. That 0.02% contains all the relevant information anyone with sufficient technology would need to know everything about your genetics.
It's just a matter of file formatting. It's like if you're giving directions to someone. You don't give every single turn along the way. You just say "you know how to get downtown from here? Okay. Do that, but take a left instead of a right on Sycamore." Or "you know what a generic reference human genome looks like? Okay, do that, but these 600,000 sites are different."
Thanks for complicating.
I'm tempted to get a full genome sequence (Well, I've wanted to for ages), then get a genotype done, and see how close I can get to my original genome by merging the genotype with a random human genome downloaded online.
@@arcadiomushi1955 Basically the idea is that if you did a full sequence on 1000 people, they'd all share nearly all of their genes (99.98%). If you take the stuff that's identical in all of them, you could call that the human template.
All you need to go from a totally generic, human template, to you, is that extra 0.02% that 23&me collects, called your genotype.
If I had a copy of your genotype, even though it's only 0.02% of your full DNA, (and some other random human's genome) I could recreate near perfectly 100% of your dna.
A puzzle with a million pieces, and there's only one piece that's different from each human. You have that one piece, that's enough.
@@funposting8912 the best explanation ive read
@@axela.9247 Glad I can help.
I’m sorry. I just find it really ironic that one of the biggest dna testing facilities is in Alabama.
10/10 comedy
Caz L Orrell haha... “sister” facility.
this is peak comedy
@Cal Vert are you defending incest in the youtube comments right now?
Hahahahahaha, nice joke
8:13 - Destin says, "This is like from the future!" 8:17 - Uses Windows XP...
Haha, I just was about to comment the same thing
Yeah...
Imagine them using Windows 10...
Literally EVERYTHING said about privacy in this video would be completely irrelevant.
Windows XP is radically less secure than Windows 10. It's so outdated it's almost laughable that this company is trusting the genetic information of its customers to that OS. It should honestly be criminal or a violation of HIPAA medical privacy and security rules.
j23eagle i want a macbook... and instqll windows
+Jacksirrom AFAIU the problem is that specialized biomedical software or drivers for the super-expensive equipment are often no longer updated to be compatible with a newer OS.
"Never change a running system" is bad for security but often the only affordable choice.
I'd guess that criminalizing the users first is probably a bad approach (it'd basically allow manufacturers to charge horrendous sums for new updates).
My bet would be on creating data I/O and format standards in the industry (cf. "plug &play" USB drives, monitors, keyboards...), or forcing a company to release the source code when they stop releasing updates?
"Welcome to the institute"....Wait a minute ive heard this before
The second i heard those words i was like ohhhh here we go
payrim Dwein
SHAUN. SHAUUUN. SHAUN. SHAUN.
SHAUN. WHERE IS SHAUN. I NEED SHAUN. SHAUUUN. SHAUN. GIVE ME SHAUN. I REQUIRE SHAUN.
😂
This is an iconic comment.
Man that's just Scarry!!!!!?????
I've got a BSc in Genetics so thought I'd explain a bit more on how significant that small percentage of DNA they take is and also add some extra interesting facts, including why we're still not really using genetics much in medicine (which I believe ties into the third party scientists mention of the "nuances of human genetics"). :)
Firstly, while I'm not paranoid about it, what they mentioned on genotyping and how little info they take - that small percentage is actually not as safe and insignificant as you might imagine. This is because the vast majority of your DNA is made of repetitive "non-coding" sequences. As an example one single type of repetitive sequence, called the ALU sequence, makes up about 10% of your DNA - this is more than all the "coding" elements put together! When you look at how much of your DNA is coding data it's actually a very small amount, so they'd actually be collecting a substantial amount of info on what makes you uniquely you, and this *could* still be used to identify you! While I say this though, the interesting fact is that in things like paternity tests, they actually don't use any coding data! They use the pattern of the non-coding elements - so in a paternity test they ironically identify the father from DNA that doesn't specifically code for the father or the child!
You may be wondering why there's so much non-coding DNA - interestingly they used to call this "junk DNA" as they knew it didn't make proteins and thought it was waste left over from evolution. They actually used to remove this on early cloned animals, but through that they realised it's not actually "junk" (if you look up Dolly the sheep, one reason she actually got really ill because they removed her "junk" DNA). This is actually used - amongst other things - to promote/inhibit/control what parts of the genome are expressed. This is known as epigenetics (which also has a lot of other areas, not just this - it's truly fascinating!), and that's one of the new big areas of genetic research. With epigenetics, we now know that even the coding parts don't specifically code for who you are as there are further controls and some of it is never even used! That is why for most genes they don't say "You have X gene so you'll get X illness" - they only say a % as your body may or may not use those genes in ways that cause that illness. ...also this is different for every cell in the body as they're all pretty much independent.
If you want to read anything even more fascinating you should look into the human microbiome - which is how they actually think the DNA of organisms inhabiting out body could have even more impact on things like health than our own genome through (genetic) symbiosis! The total bacteria inside you have potentially 100s of times more genetics data that you do, so if there is symbiosis there you can get how relevant that is - essentially they're an extension of your genome! ...worth remembering that next time you're prescribed a broad spectrum antibiotic (which basically aims to kill all internal bacteria!!). With epigenetics and the human microbiome though, hopefully that shows why so little genetic info is still used in medicine and diagnostics. DNA is not the simple blueprint of life we thought it was 20-30 years ago, so it's not a straight tool that can be used for diagnosis - it more shows you potentially how healthy or sick you *could* be, rather than what you *will* be.
Tad Springer Dolly the sheep became ill because the chromosomes of origen became from an adult sheep. That means shorten telomeres.
Carlos Alemán Dyer while that's true, it's not affected other clones that have also been cloned from adult cells as now they include non coding regions. The exclusion of non coding regions meant there was less control of gene expression, which led to extreme levels of inflammation. That's why Dolly had extreme arthritis by the time she was about 2.
A far as the shortened telomeres, there's an enzyme called telomerase that extends these. This means it wouldn't have passed to Dolly. The cells that were chosen were also taken from a fairly young sheep and were compared to many others to choose cells that hadn't lost much genetic information from telomeric shortening, so it's unlikely it played a huge role in her illness. It's all relative though so it could have still contributed.
Tad Springer I'm not inventing stuff up you can do a research and find that they where studies on telomere and telomerase as early 1994, but the activation of the telomerase was not use in Dolly. Activation, because the telomerase is inactive in mammals.
For Dolly they not only clone 1 sheep but 3 and compared the length of the telomeres between them, 2 of them were the same and1 was different because the age difference of the donnor.
So yes the fact that Dolly age quickly and had health problems is because of the shorter telomeres (Here is a simple bibliography:
Blasco, M et al.; Telomere and telomerase; Genes and development 1999, 13
Xu J., Yang, X; Will cloned animals suffer premature aging - The story at the end of clone chromosomes; Reproductive biology and Endocrinology; 1; 105; 2003
Shiels P. Et al; Analysis of telomere length in Dolly, a sheep derived by nuclear transfer; Cloning; 1(2),2004; 119-125)
wild mangrove I'll have to check those out, but telomerase definitely isn't inactive in mammals.
So never use antibiotics unless youre already dying? Tell me something i dont know. I like my microbiome old and healthy. No drugs for me thanks.
The Privacy issue is with the collected data not the discarded sample. What does 23andMe do with the collected data do they sell it share it do more research? Does the government have access to this information.
Why would the government would be interested in your possible predisposition to illnesses, or racial history?
The big concern here is less the government and more health insurance companies. I can imagine they'd love to start increasing rates or denying coverage for people based on genetic predisposition for certain diseases. And I don't exactly trust the people in Congress and the White House to make sane, well-informed decisions with regards to legal issues like that.
The privacy concern is overblown for many reasons.
List some please.
Eric M Yeah, agreed. If you have more risk you should pay more, It's like that in everything in life.
I like how people act as if spitting in a tube is the only way your dna would ever leave your body or be easily accessible to someone who wants to collect samples.
Lift Pizzas and they act like people can just "create a virus to kill only you" because they don't understand dna. What these companies do it look at your genes, they can't just change your dna to make some virus. The closest thing we have to gene modification isn't even 100% accurate at all and will take YEARS to be even close to what we want from it. People need to stop fearmongering others and grow up
While you're right that if someone wants to target you specifically, they can get a sample with a fairly good chance of no contamination. But realize 23andme also asks a ton of questions, and is a bigger target for large scale DNA profiling (insurance rates, etc). Not saying it will happen, but be aware it's not the same.
Lift Pizzas in big data business the real challenge is sourcing large volumes of clean, labelled, structured data. So while random dna is everywhere, carefully collected, labelled dna samples are not. People submitting their dna to companies like this gives them the massive opportunity to mine and resell that data.
Lift Pizzas because it makes it a lot easier than scraping off a toilet seat or leftovers
_PhilfreezeCH_ I believe Turdeau was saying blacks, mexicans, and arabs are genetically predisposed to having an IQ below 100. As a sort of trend. They were not saying without a doubt ALL surely do.
That elbow bump was further evidence that Destin is an omniscient being, with knowledge of future events
Sterile 5 (air high 5) or (foot) low 5 or elbow bump has been standard lab practice (in cool labs) for decades. 😁
I will NOT help China develop a genetic bio weapon to kill everyone but Chinese dna. Obviously the genetic data goes somewhere... C'mon if your that naïve
Oh wait, nevermind. Corona testing already did that....🤔(Los Angeles Sheriff press conference)
I was concerned about what actually happens with my genetic information when submitted to 23andMe, so when they approached me and asked me if I wanted to make a video I decided to investigate it top to bottom. Visiting the Lab and learning that their data is contractually isolated from the sample and the fact that it's not the entire DNA sequence being sent to 23andMe headquarters passed my smell test and satisfied my privacy concerns. My wife spoke with professors and industry leaders from around the country and learned about the benefits of a future of medicine based on genomics. My wife, Dr. Lamb, and 23andMe all independently stressed the importance of understanding exactly what the results of the health genotype testing mean by consulting your (well informed) doctor. In a nutshell, the results don't provide deterministic results, but a probablistic indicator based on historical data. Many other factors play a huge role in how your body works.
My biggest concern with 23 & Me and the others, is that they refuse to give "forever" privacy on your data. This is made worse by the fact that they won't let you submit DNA "anonymously". (ie, we give them money and a return address, that's all) The issue here is that insurance and or anyone else has access to the IMPORTANT gene sequences. Things like genetic propensity of your genes for things like cardiac problems, Alzheimer's, etc. You know, things that cost insurance companies money, and make you a bad insurance risk. YEs, they don't share the info NOW, but they refuse to put "forever" in the privacy policy.
Gosh, Amanda is *beautiful* and SO NICE. Not related to DNA, but related to fact :)
With respect, you're wrong on every point. You can achieve the "forever" condition by choosing to destroy your sample and the data. I investigated every concern you just brought up (because they were also my concerns) and checked out every counterpoint and validated each one either with my own eyes or a third party. You can delete the data and I saw samples destroyed with my own eyes. You also don't have to provide a return address. Insurance doesn't have access to the data, in fact there are several laws about this.
EDIT: 23andMe read this comment and asked me to add this clarification:
You can have your sample discarded after a 6 month processing time. Your account can be closed, at which point your information will be removed from your account, but some information may need to be retained to comply with lab quality regulations, such as CLIA.
You're wrong.
She's super smart as well.
When the guy says, "Welcome to the Institute" I got Fallout 4 flashbacks.
Yep.
I found the comment I've been searching for
YEEEEESSSSS!!!
YESSS THANKYOU!!!!!! Is it ironic he looks like a groomed version of SHAUN?
Reminds me of Voyboy's cringy subscriber notification on stream
you had the opportunity to ask every question and you did not ask one really critical or scectical thing. thats just normal advertising
he made a joke that they dont actually throw away the samples afterwards but that was it unfortunately. either he is getting paid a ton for this or he is just clueless on the real privacy issues that are at stake
what questions would you have asked?
joshGerbwrecked I think if possible we can start by referring to their terms and conditions. Like whether or not they will give the information to the government if the government told them to.
Looks like I'm not the only one that observed this. That's right he' just advertising for 23 & me and getting a piece of the advertising dollars.
@@joshG1513 1. With whom might 23andme share my results? 2. Can I be compelled to disclose health results for purposes such as employment or insurance rating? for starters.
Got a kit, but the privacy concern is still nagging at me so I started to search for reviews and came across this, among other videos. This video actually made me really hesitant about consenting and sending my saliva in. Questions were softball and Destin went in like he's already part of the 23andme team, like he's there to debunk all your concerns, and not to find out if there is anything you should be concerned about. Many people brought up the fact that you actually gave them your entire DNA, but they're the one that chose not to use the entire thing. Destin showed how the saliva samples are tossed but not the digital info that they already logged in. He said Tara went and spoke with different researchers and professors all over the country and discussed the benefits and risks of doing this type of testing both on the individual level and its overall implications for society... but all that's shown in the video is her key takeaway, that optional questions are the key for scientists to find out what genotypes affect what traits, and they, as a family, want to contribute to the body of knowledge (5:41). At 12:49 she said she feels the benefits outweighs the risks (did not explain what the risks are), and that the information is helpful for the society as a whole as well as the individual. I feel like Tara's part is very weak, no actual discussion with researchers were shown, basically we'll just have to take her word for it. No wonder he had to say he didn't take money for this, because this does look like an ad for 23andme.
I felt the same way about the video. Really made me question the rest of his content.
Well now. How do you feel now, 2 years later, and knowing that 23andMe is about to sell everyone's DNA data off to the highest bidder? Bet you're glad you didn't listen to the hype. (:
They should have said something like "you're only giving a really small part of your entire DNA, ***however the part they take represents the most unique parts of your DNA, which is why they take those***". The privacy concerns are very much relevant and the argument used to reject those concerns - it's just a tiny bit of your DNA! - is not valid.
It does completely wreck the cloning argument. You can't make a clone with only 600,000 base pairs.
Anthony Khodanian yes, but the other 99.998% of your DNA is pretty much the same as all other humans, so if they had the technology to clone someone from a complete genome, they could probably clone you from that little bit of your unique DNA combined with the rest of the DNA shared with all other humans
There are 3 million differences between human genomes and according to Destin's video, 23&Me tests for 697615 markers which is still only about 23.25% of your unique genetic makeup. So this argument isn't entirely valid
@@tjc9514 you do know how well computers play chess now?? They could easily model the rest.
@@jackfiercetree5205 sure you could iteratively go through every possible combination but it would be extremely prohibitive, even with advanced chess playing AI
I did my DNA through Ancestry and then ran it through a health program called Prometheuse. I did it because everyone in my family dies of cancer, and I wanted to see if it said I was genetically predisposed. Well, guess what? It came back and said I have the BRCA-1 gene mutation, the gene that gives you a 70% chance of breast cancer and 40% chance of ovarian cancer and a high risk of other cancers. I was so upset. I grieved, I obsessively researched, I cried.... it was terrible. Then I went to my gynecologist to discuss my options. She redid the test just to be sure, and 2 months later.... it came back negative. Turns out I never had the BRCA-1 gene mutation; Prometheuse just told me I did. I spent 3 months of my life freaking out and telling my family to get tested... It was rough. So user beware when you get your results back! :(
I'm not sure if it's true, but I've heard people say that if your insurance company knows that you're genetically predisposed to a certain disease, they can deny you coverage. This was before the health care laws changed, but it's still something to consider before getting tested.
@@KLHKLH Ohhh, I never thought of that! What an interesting point.
What is done with the digital information gathered by 23&Me and the labs? They trash the samples when people don't want them to be stored, but they've read the DNA already and stored that information digitally, I'm sure. Is that also destroyed?
Who knows... :)
I would try reading the 23andMe privacy guidelines. I bet somewhere there's something that says "This information, if you choose to have it destroyed, will not only be physically destroyed, but our system will also delete this information after X amount of days/years."
I mean, I can't imagine they'd be able to afford saving all that data on their servers for too long.
@@vjm3 well... This is genotyping so it's looking at .02% of the genome, and the full genome on the other system was about 80GB... If my head math is correct that would make the multiplication come to .016GB but even then that's too much because each of those 600,000 genes was simplified by reading off a binary Gene type from the final base pair. In the end they wound up with 600,000 bits of information, which would make for a miniscule file size. I'd say that this falls into the category of so little file space it costs less to keep it forever than to deal with the logistics of knowing whether to get rid of it or not.
People are forgetting they have to save the data so you can access it...
I know this is 6 years old now... But with current data breaches have shown that they indeed do store and use data. And with how the genome works not only your DNA but also the genome of close family members have been leaked and sold online.
Would love a follow up from Destin on this. Especially how he feels about these services after this incident.
It’s never been a secret that they store data lol. People’s relatives profiles were compiled, which consist of names, ancestry compositions, cities etc. pretty basic stuff.
Unfortunately, there's still some uncertainty around the legal implications of knowing various genetic testing results. To their credit, they clearly outline the risks in their Terms of Service:
"While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, its protection against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life, long-term care, or disability insurance providers." ... "If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud."
Yikes!
It's also unclear how much information they associate with your account. They definitely ask for your full name and date of birth, although I suppose you do not have to provide real details. I do wonder if they store the address a particular barcoded tube was shipped to, which is harder to conceal if you are concerned about your privacy. They do sell kits in stores, but you still have to pay a separate lab fee through their website when you submit your sample, making it hard to have a truly anonymous 23andme account.
The bit about .02% of your DNA being analyzed is a bit misleading. If you go back and look at that bookshelf, there is a binder labelled "exome," which contains only the coding regions of DNA, and accounts for about 1% of human DNA. 0.02% is still a lot smaller than 1%, but the vast majority of your DNA is identical to others (even other animals), so a relatively small number of SNPs could tell you a lot about a person.
I am also curious about what kind of data they give you if you are truly curious. The FDA has finally allowed them to disclose some health information, but there are certain categories of health information that they cannot give out. However, I have heard that you can download the raw SNP data and interpret the results yourself?
"Yikes!"
Yikes indeed. This is one of multiple reasons why, for the time being, my doctors and I have agreed that not pursuing a confirmation of Ehlers-Danlos with a geneticist, and keeping it off my files, is the best route to go. There are some clinical reasons as well(treatment & monitoring isn't affected, ignorance by healthcare professionals makes it borderline-useless anyway, etc), but the concern that I may be screwed in areas like life insurance or future holes that get poked in federal protections is definitely one of the bigger reasons that have come up.
It's really sad that issues like this alter the clinical suggestions of medical professionals, and that we have to tip-toe around it until it becomes absolutely necessary to be recorded on paper.
Why would you be obligated to disclose such information to them if you have it?
Gwen C HIPPA gives you the right to with-hold this info. Even in records, I work in a medical facility; for Labcorps in fact (once PAML) and some of that data is retricted depending on what it is. We have three sections that I can come to a conclusion with. The insurance company, the billing provider and the medical facility where the doctor is.
@@Jooonathan Because, like he said, it could be considered fraud if you don't.
I love the LED accents on the sequencing machine. Like, you didn't have to... but it's a million dollar machine and you went that little bit out of your way to make it look futuristic and sciencey.
That's exactly what I thought. The machine looks very well designed because of that.
James Congdon dude, same
I had the same thought, it's totally worth it
Why did I think the same thing lol
yeah and i like the Windows XP machine plugged into the Genotyping machine at 8:27, no extra money spent there
8:12 _"This is like from the future"_ . Three seconds later..
8:15 Windows XP running in the background 😂😂😅
Ahmed M IMO Windows Xp and 7 were the last good Windows
That's not Windows XP, that's Vista.
William Garcia but not good for gaming and editing ;)
Me iz pru depends on what game you wanna play. Newer games, not So much. But older games run wonders in these OS.
Weedle Guy what's the point ? you can play old games on newer windows, and .. oh cmon who still play old games ? newer is better baby
Let's be honest. it should be called 23andMe plus the government or whoever ask for your info
Yeah cause the government is gonna be able to do loads with that 0.02% of DNA
@@liammargetts it's the DNA that varies from person to person. No other person is going to have YOUR 0.02% that they test
Yea true, id never give any of my DNA away willingly
Moron, did you not watch the video??? They don't ever get you name, your data is strictly linked to an email account simply in order to send you the data.
YES you certainly can go to their site and share more information, including name, DOB etc. but that's often more for people interested in geneology. You can protect yourself using a throwaway edress if you're that paranoid.
You mad bro lmao
"you're hiding this samples afterwards huh"
Amanda: *His on to us*
xKarma _ "his on to us" what about his on to us?
Sam Werner He made a mistake, grow up.
He's*
As much as I appreciate your support *Jack C* , sadly I have to face judgement and exile for my typo, farewell old friend. *Fades Away*
Your 'e' and 'a' were mixed up with your 'i'.
You're not covering what happens to the Health + Ancestry Service samples or where that data is then used after you get your results. My biggest problem with this service is what they discovery in your DNA (for good or bad) can be used with any compensation to the individual because they signed those rights over to 23andMe. Read the fine print, I did. As for the physical samples be being destroyed, that should not even be an issue, the "spit" is like the plastic bottle your soda comes in as the data has be collected and is now in the system and is for sale and has been sold already to pfizer or other companies. Don't get me wrong, I'm all for the betterment, but I have to draw the line when it comes to a company making money twice.
Just curious, I dont mean to be confrontational or anything, but can you maybe just paste the fine print you found? Im just curious and would like to also see what, how, where, etc.
Tara, thank you for being willing to be on camera to share this, and for your important points. Both my husband and I are adopted, and I am planning to do the genotyping for both us and our two kids because we are lacking even the family stories that might give us hints. (So...at least we don't have to decide whether to share with our wider families!) Destin, thank you for asking them for the concessions you did, for getting a 3rd party to discuss the details of the system, and for making this video to share with us all. It is really nice to have more information about a company I'm planning to use sometime this year.
I am afraid this video is misleading and irresponsible. 1. any number of markers are unique to an individual. Thus, 600,000 markers will uniquely identify you. And 2. this data is being sold (like the purchases made by GSK for $300,000,000 and other companies) - our data is being monetized and distributed without our consent, putting us at risk of genetic discrimination, if it gets out to employers and life and health insurers. There are no guarantees for our privacy, given that our data is already sold and 23nMe is constantly asking their users for more and more personal information.
100% agree. And your selling all your family data in the same time. Maybe even your cousins. Juste remember that the CEO of 23 and me is the ex-wife of Google co-founder. That says a lot.
Art Pin yep!
Whats genetic discrimination
Alright let's assume they do sell our dna information(it probably is), how is that bad? What's the point of privacy if they scan only a certain parts of dna and you probably share that part with a lot of people? That was a bad question tbh but I'm really curious why do you find it wrong
Funny, I have an acct on 23andme and it doesn't constantly ask me for anything other than to suggest health surveys I might be intersting in answering multiple choice questions about- those surveys are voluntary and can be turned off in preferences.
2:25 - "Welcome to the Institute." Destin better watch out for the synths
That name tho
those Synths are everywhere. how do we know that scientists is a human? she looks suspicious. -_-
lmao, nice.
I thought the exact same thing, and went to the comments hoping somebody else did
scrolled down just looking for this! made my day hahahah
The 0.02% thing seems a little bit of a misleading statistic. While it is true that is the overall percentage of your DNA, it is slightly misleading in that its not necessarily the percentage of your DNA that matters. Consider how much of our DNA is shared with a Banana (~50%) or a chimpanzee (~99%). Then consider that a not insignificant portion of our DNA is considered to be non-coding or junk DNA.
All that put together could make the percentage of your DNA that they are testing for out of your total DNA that matters a good bit larger. I am far enough from an expert to not know even within orders of magnitude what that final percentage would be, but it would almost certainly be higher than the 0.02% stated.
That said, that doesn't scare me off of testing services like 23&me so much as not seeing it as a good value at its current price.
Thanks for the video!
Brent C They don't claim that percentage as part of their value at all though. It has nothing to do with it.
don't forget the privacy term will always include the following term: UNLESS REQUIRED BY LAW.
People often forget this fact. The U.S government will bully any company into giving them your information if that company wants to stay in the good graces of good old capitilism.
So you shouldn't let yourself be put on the grid in any form, since courts can order disclosure of ANY information. Have fun living in a cabin in the woods without electricity, bank account, auto, job, internet, etc.
Philip Webb Ha, you seem to be the one paranoid. Never once did I mention not to sign up for anything as that would be impossible. I merely pointed out that fact. If you have nothing to hide right.... I'm all for civil conversation but one of my pet peeves is having to argue a point I didn't make. I hope I cleared this up for you. Have a great life.
@@weirdworld3874 OR, you can enjoy the other option which is to ignore the fact that undetected murderers are walking among us that could be arrested. Which do you choose to sacrifice: your privacy or your safety.
It also includes that they can change their privacy policy at any time they want.
09/07/2017 - "We won't sell your information. We value privacy."
07/24/2018 - "We're partnering with GSK to share genetic information in return for a $300M investment."
02/09/2021 - "We're merging with VG Acquisitions to allow public investment."
And this is why some people never trusted them to begin with. But hey, you can still "opt out" right? At least until the new board may change their mind about certain policies.
And they got hacked and the data exfiltrated. So much for privacy and security.
They weren’t hacked.
8:43 open spit vials and no one is wearing masks???? Am I the only one that thinks that could contaminate the samples?
IamaDave, this caught my eye as well as knowing the evaporative permeability of saliva into the atmosphere, why aren't they wearing masks for their own protection?
Usually the vial has solution inside it that destroys bacteria and preserve the DNA. The lab of such huge company should be strict enough with the cleanliness standards.
IamaDave i think they crack them open, but the machine is what actually opens them. You would think they'd wear masks tho
Yeah.. That kind of concerned me as well :|
+JassSerenity Well, seems like it's nothing to be concerned about assuming kjthoward is correct.
7:05 it's nice how you put those uniforms and then a delivery guy just enter with normal clothes ;)
I literally poated my sample off to 23 and Me an hour before this video landed :)
I was adopted from birth and have absolutely no idea about my heritage or any genetic predispisotions. I'm looking forward to the results.
Now finally I can answer my doctors questions ''do you have a history of xyzabc in your family'', and finally I can have an idea about my genetic roots and where I'm from.
I was a bit surprised to see at 8:15 that the technician that is de-capping the saliva samples before testing them is actually talking over all the un-capped samples without any sort of mouth cover, potentially contaminating the samples. Anyone else thought about that?
Any resulting contamination from breathing over a sample is negligible. The worst possible scenario for contamination would be for the technician to actually spit in the original sample, which would result in (potentially) different reads for the same location. This the concept of coverage in sequencing, in order to ensure there are correct matches: en.wikipedia.org/wiki/Coverage_(genetics)
Contamination from foreign spit over air is nothing compared to chicken bits from your sandwich you had for lunch before spitting into the tube.
Zedex 12, you watch Adam ruins everything too? :P
Wow. One of the reasons I haven't used a service like 23&me is that I was worried about the reliability and accuracy of the results. This has allayed many of my concerns. Thanks for going the extra mile on this one.
Well, how do you feel about that company now?
Neal: "welcome to the institute"
Destin: WHERE IS MY SON!?
I think we are the only people who understand that 😂😂
I love this. I have questioned creators who have been sponsored by 23 and me but also were in support of individual privacy. Great video and great subject matter. Can't believe this is 3 years old and I'm just seeing this I've been subbed for awhile.
This was great, I actually did 23andme not too long it gave back pretty accurate results and some surprising stuff. Nice to know they are a very credible company
People always say that they are concerned about privacy yet we post the things we post on social media which is public.
We get to choose what to put in the public. Some of us are just less smart about it than others.
2018 I have no Twitter no Facebook no Instagram and no other social media online except for this and Xbox. So speak for yourself on that one.
People are mostly concerned about the details of their health and medical history. They don't want to risk it being exploited. There's a buch of other comments explaining this.
We are concerned about privacy as if there's anything remotely interesting about us. Gg
Oh, scammers and ID-thieves certainly find it interesting...
Not to be paranoid, but just to be more clear: You are giving WHOLE of your genome, but they say that they use only specific parts (0.02%?) of it.
Please correct me if I am wrong, @SmarterEveryDay
the method they're using only reads for specific parts, it takes an entirely different method (video implies a far more complex and costly one) to map the whole thing
they do not have the equipment to analyze your whole genome, for that they need machines like you saw in the beginning
I do understand that. But there are two things:
- For specific people, they may send the sample to another lab.
- I do not think the visit was a surprise visit.It seemed like a planned one. Understandable, but ...
I'm actually studying for laborant, and I can tell you, the samples you get are just labeled with the barcode, you don't get to see any names. also this only requires your email address. you don't have to say your name. the way they work in the video is actually how the work is in real life. so yes this may be a planned visit, but on the other hand I can confirm this is the daily way of handling stuff at the lab.
" For specific people, they may send the sample to another lab."
The lab that does the testing doesn't have information of which sample belongs to who, as he said, the lab has a number and a sample, while 23andme has a number and an email
I don't care about the sample, what happens to the actual data? How long is it stored?
What's stopping them from selling it to an insurance company?
Even if they super duper pinky swear not to what's stopping them from changing their mind some years down the line?
This video does exactly nothing to address my privacy concerns.
"My wife insisted on taking my place, for reasons she will explain herself." Fully expected her to say "I need a day off from looking after the baby. I'm outta here!"
James Palmer women would never actually say that but they think it
@8:15 she is literally talking over the uncapped samples.
1. I get to ask any question
2. I get access to the labs
And number 3... I want an adult sized krabby patty
Dear Destin,
THANK YOU for contributing to the betterment of our class discussion in my Biology Brainiacs course today at Dale County High School in Midland City, Alabama! We have been learning the finer points of DNA and Genetics for a week now and have just begun talking about DNA testing and its' future. We have a local cold murder case that has gone viral in the news so the kids have had a lot of questions about DNA testing such as that done with 23 and Me and how those would relate to possible forensics cases. My husband subs to your channel and was showing me your channel at 4:30 this morning when I stumbled across this gem of a video. I had the pleasure of working with Dr. Lamb several summers ago and just adore the way he allowed you to tell the proper story of DNA testing in a lab setting so THANK YOU for being such an integral part of my lesson today!
In True Nerd Love,
Crystal M. Newsom and the Biology Brainiacs of DCHS
I sure do hope you approached this video with scepticism and discussed the privacy concerns. Otherwise you just left a bunch of kids misinformed and encouraged to donate their genetic profile for others profit at their own risk.
This is awesome! It makes me want to contact these specific companies and let them know how thankful I am for them being so transparent! It’s such an important thing!
2:25 "Welcome to the Institute"
*Destin is a synth!!*
I always greet Destin back at each intro
lol. Welcome back!
Man you must have loved Dora the explorer
okay, yes, they are only looking at 0.02% right now. look at the fine print. their terms of service allow them to keep your sample indefinitely. there is nothing stopping them from deciding to fully sequence your DNA in the future. not to mention only a small part of your genome is actually useful information, and there is a huge section of the human genome that is not only not unique to the individual, but not even unique to the human species. That's not a privacy selling point, that's just a point in favor of actually getting a medical test done instead, since you can learn a lot more that way.
Privacy IS an issue because the tests do not allow for anonymity. Setting aside the shipping address, the only billing options are Paypal and credit card. Both leave an identifiable digital footprint. Further, the data is stored permanently (whether the physical sample is or not) and can be vulnerable, now or in the future, to hackers, employers, health insurers, and the US government's Combined DNA Index System (CODIS). I know that not many people take privacy seriously anyway, but these companies could include bitcoin and/or cash payments options, and the ability to pick up kits (stocked or pre-ordered) at someplace like affiliated drug stores and pharmacies. But I'm sure that's not practical simply to cater to a niche portion of the market :)
Buy a prepaid credit card with cash. Use a fake name and temp email address for the DNA thing and have it sent to a friend/neighbor's address. Nothing is linked directly to you.
You can buy it at target. Lmaoooo
@@Jaden-s7x
Those kits are only valid for US residents and only provide for the ancestry analysis. The health upgrade still requires payment via paypal or credit card. Lmaoooo
Well, there are many theories that they store your dna so that they can come up to you and say “you are susceptible to this disease” and then try to sell you a specific medication that will “help” you. I’m skeptical of this theory, but it does make sense. But it is pretty crazy that the ceo of this company is married to a family member of the ceo of Google. Kinda freaky.
The police can get your DNA anyway with a search warrant if you are suspected of a crime.
Full raw uncut upload of the vlogs? Getting really curious about the conversations she had :-)
I think that would most likely be something put up on his second channel, but I'm not sure if he's going to.
he said hes saving it for the patreons
They will be posted on patreon
I dunno man this whole thing seems sketchy. The guys promoting the product and every comment seems to be along the lines of “I wasn’t sure about it before but now I’m definitely going to get it done!”
I’m out.
the concern is the sale of data or the ownership of data. not the loss of the sample.
(14:20)
Psalm 139:15-16 New International Version (NIV)
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
Hey look Mom! I'm in a video! 1:31
:o
Neat
Nice! also cool user picture
LOL. Hey Destin, where's Daniel's cut?!!?!? ;)
Dear destin,
Thank you so much for the effort you put into making these interesting videos. Recently, India celebrated teachers day, and I want to wish you the same because you have been a great teacher to me.
PS: I wish I could get a high speed camera to do what you do
Yashvardhan N C do you get to prank your teachers on that day?
Being someone who is approaching their final year of an undergrad genetics degree this is like the absolute thing ever! Being able to see the theory and basics I've been learning actually applied in the real world.
Thank you so much for the amazing content and making me smarter every day!
Greetings from South Africa
Thanks Destin for the due diligence! And well done Tara! My concern is that health insurance companies and life insurance companies can ask you if you have ever taken these tests. If you refuse to answer they can deny coverage. If you answer yes, they can ask what the results were and base your premiums on your predispositions.
What ISN'T in Huntsville?
The rest of the observable universe.
thief9001 in Hong Kong you get the impression it's only finance finance law finance law law finance
Opals. But that's a different video.
The Titanic
Me?
My daughter asked me what DNA stood for...
I told her it was the National Dyslexics Association.
My main concerns: privacy; or sharing the information they obtain with the government. It’s great imo if it’s used to find suspects in crimes like they did in Iowa with Michelle martinkos case. That I can see as beneficial. I also see it being beneficial to know your dna and what you’re predisposed to... BUT that’s where it gets most scary to me. If they share the info with insurance agencies and such, the insurance agencies can start to up prices based on your DNA. Not to mention, eventually if this progresses farther I can see something like gattaca becoming all too possible. That’s where the concerns lie with me, not what they do with it after it’s disposed of. It’s what THEY do with the info that they obtain.
Destins a smart guy, surely he realizes that there's a still a privacy concern associated with giving up a DNA sample, even if they say they're only extracting a very small fraction of the information held there, seems fishy.
Rob Mckennie Sending a DNA sample in which there was no chain of custody, is by far the least worrisome when it comes to privacy.
I always thought 23 & Me only sent you ancestry data. Didnt know they also send health data. Very cool. I got smarter today. Thanks Dustin and Tara!
Psalm 139: 15-16
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
Came to the comments for this. How did you even see it??? There's preview boxes for other videos covering it, and even turning off annotations, they don't disappear.
Tree since it was the last frame when the video ends the preview boxes disappear for a brief second
Hmm. Doesn't seem to do that on my end. But thanks a lot though for living up to your name All Seeing Sage! :)
thanks
13:16 His focus and concentration on what she talks ❤️
8:34
And her spit just fell into a sample.. :$
Yeah I was surprised with the lack of masks/ caps for that part
Thats what I was wondering, even if theres a film on top to prevent sample from contamination. All the skin, spit, etc from that woman could be resting on top as the extractor needle punctures it to take a sample.
8:26 WINDOWS XP MASTER SPECIES
LOL
talk about "privacy"
Jeez, that lab is staffed by beautiful people! You sure it wasn't a movie set, Destin?
What? Beautiful people in science? Unbelievable! 100% sure those are actually robots.
They got the same people that did the moon landing.
DNA testing is one of most tricky pieces of the new medical puzzle right now. Real medical decisions can be made from these kinds of tests. One of the most common is the risk for a woman to develop ovarian cancer. Yes... knowing this risk is great! The issue comes in is what is done with this information. If you have XYZ genetic markers, would an insurance company refuse to cover you, or charge you obnoxious premiums simply because you have a marker that increased your risk of X? What other decisions can be made if your genetic markers display other things? Having been in the lab industry, I've been a part of many conversations about just how dangerously deep that information COULD be used (everything from prenatal decision making to excluding populations of people because of one genetic trait). It's a huge ethical question mark in the medical world right now and one we need to be cautious of.
I AM curious if 23 and Me actively keeps their data between you, Labcorp, and them or if they sell it to other organizations. Not necessarily with personally identifiable information (which would be a HUGE violation of HIPAA), but for their samples as a whole.
This is really cool. Great video, and amazing that your sponsor gave you such freedom. They saw an opportunity to market a service that they have confidence in and you were able to ask critical questions. Kudos to you both.
8:12 "This is like from the future"
8:20 *Finds WindowsXP* 😃
the "I didn't get a notification but soon because i have no life" squad
RUclips is my life
🙋
🕺
can someone explain why so many people in the comments are scared of the anonymity? what is gonna happen even if someone stole it or it went public? "HA i see your natural hair color is brown, yet you have red, you must be coloring it!" what does it matter?
asking the real questions
As a medical student, i'm not sure about the .02% that are analysed. I think 23andMe analyses ~600.000 sites in your DNA in which each site includes several bases. So I think it is much more bases that are analysed than only .02%.
As for the health data, it would be interested to know, what 23andMe does if they find out there is a genetic disorder that can lead to a genetic disease, for exemple SNP (single nucleotid polymorphism) and bigger rearrangement (like micro duplication or micro deletion). In these kind of test, whe should be told what we can expect from it and what we can't.
Sorry if my english was bad, I'm not a native English speaker.
Great video as always
I think they do tell you at one point that you can choose whether to opt in or out of heath related information
Julien Janet they do analyze way more than the health reports they are allowed to give you. You can download your 23andMe report and have the whole thing analyzed for $5 at Promethease.com.
I agree with many of the commenters here that the big question of data storage and privacy was completely ignored in this video, but I think the PhD in the beginning was misleading when he said that only 600,000 points are read by 23 and me. Because first of all, those 600,000 points aren’t just 1 base pair( 1 letter) they are like to be multiples, perphaps even long chains, coding for specific proteins so 600,000 may be very low number. Secondly the entire genome still has to be sequenced, and then put in order, so as to determine the location of specific codons of interest? So they must sequence the entire genome, but throw away the 99.8% that is common to all humans
I totally agree with you and the points you bring up about the significance of those 600,000 sequences and how misleading the video was, but actually they don't have to sequence the whole genome. They use that artificial DNA Destin was talking about to match up with specific points of interest, so they only have to test for those, not sequence the whole genome.
Bro for real no one should care about YOUR health and Ancestry then you so they arent trying to Monopolize you or control your body. They want to provide proper protection for you i.e. specific medication or treatments, specific to you.
5:54 - SPIKEBALL!
@Nedhudir - Haha, you're right good call ;)
AuthenTech - Ben Schmanke lll
the thumbnail kinda reminds me of those temperature readers from fishtanks
AuthenTech - Ben Schmanke i
Super awesome of 23 and me to work with you on!! That’s really reassuring!! Despite you not being a journalist or news outlet it’s people like you who are truly doing real investigations of things and letting the public know! Thank you so much!!
You didn't ask the important questions and this seems very biased.
Hey, here's an idea, WHY DON'T YOU GO TO THEIR WEBSITE AND READ THEIR DATA POLICY??? It says right on there that they absolutely promise not to share your personal DNA AS LINKED TO YOU PERSONALLY to any entity period!!
23andMe states right up front that they will share certain information necessary for medical/scientific research, BUT IT IS ANONYMOUS, as in NONE of your personal data is attached, so there's no way it can be traced to you.
And to date the cooperation they've given law enforcement has been to compare a DNA sample from a crime scene to their database to find matches or to find potential family members in order to try and identify the suspect. Those potential family members are then contacted and a request for their cooperation is made (and kept confidential from the public, btw).
yeah you go criticising a youtuber that will very likely not see this comment
@@russell2449 Because 23andme only gives tours to the lackeys they pay, obviously.
@@russell2449 >None of your personal data is attached
>Family members are then contacted
Makes sense.
@@shekharmaela2308 WTF does allowing tours (which they have also done several times for different news agencies who're covering the issue) have to do with anyone's privacy?????
Seriously, do you think that someone walking by can somehow telepathically pick up on personal data??? I don't understand why you people always jump to negative conclusions about a process you have no knowledge of at all!!!
When your sample comes in, your personal data is entered into their secure and highly encrypted data base WHICH IS TOTALLY SEPARATE from everything else, NONE OF IT follows the sample out to where it's tested - the only link is a totally ANONYMOUS NUMBER, so that even the technicians and scientist can't tell anything about the sample they're working on.
After all the work is done, the results are then linked back to the user's profile for access BY THE OWNER. The company only uses the ANONYMIZED DATA (IOW, no names/SSN/ or other identifying info) in order to sequence it and then use in specific studies. THAT IS if you allow them to, which you are specifically asked permission for when you sign up.
Seriously, you're acting like a child frightened by the boogeyman simply because you either don't know enough, or are just overly suspicious and don't trust anyone, only you know which one that is.
This aged like milk
I almost did this for cyber Monday.
Amazon had it for 50% off, but I was a little concerned.
After seeing this I wish I had did it.
I wish I had *done it
AtrumNoxProductions better safe than sorry. Maybe next year
CaptainEnglish if you were really Captain English, you would know that there is no correct usage. If you're understood, which he was, you're correct
This is the best video i've seen on this matter tbh. Great investigation and explanation from you and your wife as well as all the people in the lab. Thanks to everyone!
At which step does the CIA get a copy?
BobWidlefish the very beginning
BobWidlefish As soon as it leaves your house.
Why do they need another copy?
They already took scrapes from your tinfoil hat. :)
Remember that time when you first diddled yourself? Right after that.
This needs to be a longer video... With much more information...
More about the machines, more about the sites useful, how are other biological organisms removed from the as samples, what it the cost difference between full and partial genotyping.... Etc
Thank you for your transparency 23 and me. Your company scares me, but this helped. Still scared, just not terrified lol
When they said "welcome to the institute" a chill ran down my spine
Michael Everitt 😡 Too many views of rubbish tv! Note to the dense: you pass DNA on to your descendants - does that worry you?
Sir Meow The Library Cat its in reference to the institute in fallout 4... stop trying to pretend to be clever, because clever people don't need to reassure themselves in RUclips
Kill all Synths!!!
I had a lot of respect for you before seeing this video. You are totally pushing for them.
It would be better if you could do it "anonymously", but they don't do that. WHY? BECAUSE THEY ARE SELLING YOUR PERSONAL DATA.
what about using a fake name?
@@teddyruxpin3811 How would you pay? Cash only?
I know this is an old video, but it popped up again recently. I am quite concerned that they still use Windows XP (at time=8:26). They're probably going to end up getting hacked and a massive DNA data dump will soon be found online.
Well.. Who is here after the hacking?
23andme wasn’t hacked, there was a credential stuffing attack.
Just wanted to say that your wife is adorable and it was fun to see her in this video.
The more important question is what they do with the data. As far as I can tell they sell your data to other companies/organizations and who knows what will happen with it (the data, not the sample) in the future. Unfortunately this question was brushed over. Who cares if they only analyse .02% of the complete genome if those .02% are the only interesting parts of our dna. We share 99% of the genome with chimps, more with other humans, so it's only a tiny fraction of our dna that would be interesting to look at, and that is of course what they are doing. (Saving the saliva samples would be to extract even more data in the future when other interesting parts of the dna are discovered, interesting to the buyers that is).
Mårten Thornberg Agree. It really bothered me that nowhere in the video was this fact about DNA pointed out.
ikr, its anything but a "game changer" as Destin said
But they don't have the ability to tie the sample to an individual, so why does it matter?
InqWiper Well if 23 and me and labcorp would be working together they could easily tie the dna samples to the individuals....
InqWiper that is the kind of question that would have been nice if he had brought up in the video. Can the samples be tied to an individual, and if not how can they guarantee that? I suspect that is hard to check since all the data is likely being processed by networked computers, so only a handful of people actually knows which bits end up where. But on the other hand, they might have set things up in a clever way to make that easy to verify. Who knows.
I'm not claiming they are doing anything nefarious, but the video didn't deal with any of the real problems with this. Destin claims it was transparent and that he would investigate any big concerns which he did not, that seems deceitful to me and certainly doesn't instil any confidence in this.
He didn't even show the real processing of the samples which apparently involved conveyor belts (based on what the lab tech said) and probably is a lot more automated process.
I bought it about 2 months ago. I feel confident now that I saw this video. Many thanks to the both of you.
How does they not contaminate the sample, as they don't handle the tubes while wearing face mask
because the sample undergoes multiplication before being put on the chip, small contamination doesn't matter. As long as you have "pure enough" sample it will give correct fluorescence, because there are more "correct" matches than those with contaminant.
Loliette very carefully
It damages your credibility when you take money from the company you're investigating. I felt like some important questions were missed; where is the data stored, what is done with the data after analysis, and how will they protect the data from misuse?
This video raised more questions for me personally, and makes me even more hesitant.
8:13 "This is like the future" - And Windows XP in the background.
You know absolutely nothing about computers, stop...
If you're insinuating that windows XP is a better operating system than one of the newer ones then this is just false, as recent ransomware attacks on XP systems has shown. Windows XP is no longer supported with security updates and so it's a very bad idea for any company to still be running on it. Sounds to me like you are the one who 'knows absolutely nothing about computers'.
Relax kids, the computers run on Windows XP for driver/software/hardware compatibility. These computers aren't connected to the internet so how does one get attacked by ransomware. Companies shouldn't be stupid enough to know that lol. If they are that stupid then they deserve to face the consequences.
Edit: I'd like to think and hope that they aren't connected internet, I could be wrong.
if in the future majority of the population goes back to Windows XP, I don't want to be there
So what exactly do you expect to happen if hackers get into a computer controlling a lab automation robot? Worst they can do is to invalidate the samples or maybe damage the robot. This is entirely the lab's own issue, and there is no point to even care about it.
I never actually thought about this, but whoever invented the 23 and me process is a complete genius
It was started by the ex wife of the guy who owns Google. He backed her project for sure. Seems sketchy....
I wonder what happens if you send your cat's DNA in, instead of yours...
The probes would not attach to the cat DNA, because they are made for humans.
...Or will they?
opl500 😡 Only an idiot would think of that . . . Oh, wait he just did!
Destin: "Hello... Destin."
Neil: "Hello, Dustin!"
The cross contamination going on in that lab with the girl speaking over open tubes, the hair flopping around not to mention touching every tube with the same pair of gloves wouldn't be acceptable in basic food prep or any allied health field let alone sampling unique DNA. What a joke!
i love how it look that every 5 years old could do their job. open a box. scan. then open bottle. place it in the machine. toss bottles in trash. wow so hardcore
Yeah the moment I saw that it made me question if any of these people are even qualified.
How can they claim to do accurate DNA analysis when they don't even understand the basic scientific premise of contamination, this dumb lady was spitting all over everyones DNA samples-
Like I don't even understand how this was allowed to happen, it's basic scientific practice...
@@grumpyaustralian6631 LOL that's not how DNA works. You can't just mix it
@@jeanbiroute they're contaminating the labspace, that's the issue.
It's an invalid sample if two DNA types are detected, and they're still invalidating the samples she's speaking over and wasting people's time, spit and money.
Ps: My lab technique is flawless.
@@grumpyaustralian6631 Speaking over it will do nothing. There's no contamination what so ever. She can even sneeze over it it won't change a thing. The tube would still be filled with 99,99999999% of the clients saliva. This isn't like chemistry.
best advertisement anyone could ask for
Can you deep dive the way the analyze the ancestry data? I've heard very mixed things about it and how their sample data doesn't scientifically give them the level of certainty that they imply with their reports to customers.