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  • What's up, I'm Destin, this is Smarter Every Day. You've probably heard of 23andme. It's one of these companies

  • where you spit in the tube and you mail it off and they do DNA testing and give you ancestry and health data.

  • Well, here's the deal

  • They approached me and asked me if I would make a video on Smarter Every Day about them, and what they do

  • But there's a problem with that

  • I'm really

  • fascinated with this technology like I think this is the future of medicine. Imagine a doctor walking into your room opening a chart and saying

  • "Oh well

  • I can't give you this drug because you're genetically predisposed to a negative reaction"

  • That is the future of medicine so I really believe this is important however

  • I can't do an ad

  • for something this important and have you the viewer think that I'm just shilling for a company and saying what they want me to say

  • because they're giving me money, so I set up the following terms. I said, look,

  • I'll do this video if, number one, I get to ask any question

  • I want of anybody and I get to say whatever I want as long as it's true

  • And they said yes to that and number two I want access to the labs with my camera

  • And I want to be able to ask the scientist questions, and they said yes to that and that never happens !

  • That's awesome. And number three

  • I told them I actually wanted them to sponsor the video

  • Which they did so to their credit, 23andMe is sponsoring a transparent video

  • which is a little scary for them because they have no idea what I'm gonna say. So here we go,

  • Let's do this. When you get the kit. It's pretty clear how this exchange works.

  • I give up genetic material, and I get health and ancestry data back, but that's scary

  • I don't know what they're gonna do with my sample

  • I don't know exactly what I'm giving up. When I ask people on Twitter, everybody cited privacy concerns, so just for a second

  • let's pretend that we can't trust this company we need to go to an independent third-party

  • expert that knows exactly what type of information we're giving up when we spit in a tube and mail it to 23andMe

  • So when a lot of people think about, Huntsville, Alabama,

  • they think about the space industry like the Saturn 5, right ?

  • But what you didn't know if you get on Google Maps and go to

  • 601 Genome Way, you're gonna see a double helix

  • you can see from space. That is this place.

  • No joke. Huntsville,

  • Alabama is home to one of the largest DNA

  • sequencing centers in the entire world and it's in my hometown like I see these people at PTA meetings. The HudsonAlpha Institute for

  • Biotechnology is where Dr. Neil Lamb, a PhD in human genetics works.

  • We're go in here and learn about DNA sequencing. Hey, are you Neil ? NEIL>> I am

  • DESTIN>> Hey, I'm Destin. NEIL>> Nice to meet you

  • DESTIN>> Nice to meet you, yeah NEIL>> Welcome to HudsonAlpha

  • DESTIN>> Chris nice to meet you guys

  • Hey, how you guys doing, you doing all right? NEIL>> Welcome to the Institute. DESTIN>> Yeah, thank you. This is fancy.

  • NEIL>> Is this your first time here ? DESTIN>> No actually I

  • upload stuff to the YouTube channel here because you have the fastest internet connection in the city

  • Did you know I did that? NEIL>> So we're headed to the genome sequencing center

  • which is the all of the sequencing machines that we have at HudsonAlpha.

  • DESTIN>> Ok, so these are the sequencers right full-blown DNA sequencing. NEIL>> These are DNA sequencers

  • This is really the heart of HudsonAlpha. These machines are designed to take an individual or an organism to sequence

  • it's broken up into small pieces and the

  • sequence A's T's C's G's... DESTIN>> for the entire genome? NEIL>> for the entire genome. DESTIN>> Like how much data are we talking there, in bytes?

  • NEIL>> So the raw data that comes out of this machine is about 80 gigabytes of information for one human genome.

  • DESTIN>> Okay, this explains why the fastest internet node in the city is it HudsonAlpha. NEIL>> That is correct

  • DESTIN>> Does 23andMe have like a bank of machines like this ? NEIL>> 23andMe uses a completely different technology for genotyping

  • DESTIN>> So what's the difference in genotyping and

  • full-blown DNA sequencing ? NEIL>> So to answer that question let me show you another illustration. This is a representation of your

  • genome. There's a hundred notebooks on the bookshelf, and I want you to imagine that each of those notebooks, has

  • 5000 double-sided pages full of nothing but

  • DNA sequence. DESTIN>> Adenine, cytosine,

  • thymine and guanine. NEIL>> Exactly right so you've got two copies that copy you inherited from your mom and the copy you inherited from your dad.

  • So this is a representation of one of those two copies the amount of information that you're gonna get from

  • 23andMe is not all three billion bits of information.

  • Instead, it's more like about

  • 90 pages. DESTIN>> Really? Now, what's the difference in genotyping and just doing a DNA sequence, what's the difference in those two things?

  • NEIL>> Right, in DNA sequencing, I'm reading through every single letter in your genome. With genotyping,

  • I'm going to a specific place, and I'm saying at this one site, what do you have? And with genotyping I'm doing that...

  • well for 23andMe they're doing that at about

  • 600,000 sites across your genome. DESTIN>> So it's not like you're giving away your entire DNA sequence when you do something like this. NEIL>> That's right

  • You're only giving away a tiny fraction of your genetic information when you do something like 23andMe. DESTIN>> Okay,

  • Got it this it's not your entire sequence

  • I thought it was I thought they were gonna be Destin clones walking the streets

  • But if you do the math it's only 0.02% of your sequence. That's a game-changer

  • They should like put that on the website or something.

  • Okay, was at this point that I was invited to an education summit headquarters in Mountain View,

  • California. My wife, who's really smart when it comes to genetics, insisted that she take my place for reasons, I'll let her explain

  • TARA>> I am a medical professional as someone who's done

  • genetic research in the past and wanted to know if it would benefit you guys there were if it would harm you guys

  • So I'm here ! DESTIN>> This part is super cute to me because she doesn't like to be on camera that much

  • But I asked her to vlog just a little bit

  • She went and talked to professors and researchers from all over the country

  • And they discussed the different benefits and risks of doing this type of testing both on the individual level and its overall implications for society

  • The main thing she learned is that the optional questions are the key. When people answer the question scientists can start to figure out what

  • genotypes affect what traits. We decided, as a family, that we want to contribute to the overall genetic body of knowledge

  • because that's going to help

  • society in the future. Okay, after you decide to spit you were about to send your genetic information

  • off to a third party. Kind of scary... so a set up an email address

  • Specifically to do the kit

  • and it's pretty interesting because there's no return address so really the only indicator for which tube is mine

  • is this 14 digit code. I spit in the tube, you're smart, you can figure that part out and you write down that

  • 14 digit code on the tube and link that to the email address and that goes to 23andMe headquarters.

  • The kit however, does not go to 23andMe headquarters

  • it goes to LabCorp, a completely different company after doing some research

  • I discovered that 23andMe has isolated themselves physically from the samples. LabCorp has samples and numbers

  • 23andMe has

  • email addresses and numbers I decided to spit in this thing and then chase it out to

  • California to see what happens when it hits the door of the lab.

  • This is the first time LabCorp allowed someone like me into the lab with a camera

  • I was introduced to the lab manager Amanda Douglas and was told I could film anything and ask any question I wanted

  • AMANDA>> So we're at the National Genetic Institute

  • DESTIN>> National Genetics Institute okay. AMANDA>> It's a subsidiary of LabCorp.

  • DESTIN>> No way is that the FedEx guy that brings brings the stuff in? What's up, man?

  • Do you bring all the samples here? FedEx Guy>> Yes I do. DESTIN>> Nice to meet you man. This is way more behind the scenes than I thought it was gonna be

  • AMANDA>> This is a small batch so we open them by hand but with larger batches there's a conveyor belt

  • DESTIN>> Really? AMANDA>> And that will cut them open

  • DESTIN>> And so you open them and you... Oh! He's actually got the sample, okay, so what's your name man? LONNIE>> Lonnie. DESTIN>> Lonnie, I'm Destin, man

  • Nice to meet you.

  • All right, so we got our spit in the system now what?

  • AMANDA>> Alright, so now that the spit is in the system, we'll know...

  • ok, let's go ahead and test the ones that are ready to test and then they'll move on to the lab. DESTIN>> Is that where we're going now? AMANDA>> That's where we're going now.

  • DESTIN>> Sweet. These are all specimens here. So Lonnie has done his thing, we come in here, and we're ready to extract the DNA. AMANDA>> That's right.

  • DESTIN>> Okay AMANDA>> So we'll go on here

  • DESTIN>> Oh, this is so rad... Oh god !

  • This is like from the future. What are you guys doing? LAB TECHNICIAN>> I'm currently uncapping

  • specimen sample, to be able to put them into the

  • Tecan which will then take a little small amount of this into the 96-well plate.

  • DESTIN>> Okay, so these machines are autonomously taking the samples out of the specimen tube that people mailed in and then it's

  • Automatically putting those into the 96-well plate. That's what we're doing

  • Got it. Okay, so this is the first time where we no longer have humans touching it, and we're moving towards machine automated process. LAB TECHNICIAN>> Exactly.

  • DESTIN>> Is that it? I would high-five you, but you get gloves on. I

  • spent the entire day with Amanda learning the whole process and basically it works like this. First

  • they isolate the DNA and then they amplify it by allowing it to replicate and then the magic happens. This chip is the secret to

  • genotyping. Basically they take the DNA, and they unzip the double helix

  • which leaves you with one side of a ladder rung they then put this unzipped DNA onto the chip

  • which has

  • thousands of artificial DNA probes on it these probes are basically long stretches of DNA that match known parts of the human genome

  • So when a ladder comes along and gets beside the probe it's a perfect match and will bind to it

  • Since this stretch of DNA is a known sequence you can then read the next base pair

  • That's hanging off of the probe and that's the specific information for that base pair

  • They do this by a fluorescent marker that they'll put on the chips which reacts to different kinds of light these specific locations are chosen

  • because they're associated with something interesting like a disease risk or a physical trait this fancy machine

  • illuminates the chips and takes a picture, which tells you what letter you have at that particular DNA snip

  • Or single nucleotide polymorphism, and that's it. That's how the data is captured the next thing

  • I wanted to know is what happens after your sample is tested. On the website,

  • you could choose to allow lab core to keep the sample on long-term storage for future testing or

  • You can check a box and tell them to destroy it

  • I asked Amanda if she would show me this because a lot of people want to know if they check that box

  • It's actually gonna happen. Amanda has agreed to show me the process. It's really exciting I'm told. AMANDA>> Oh

  • Yeah, you're in for an

  • excitement here, so

  • we take a box of

  • 120 samples that we've scanned and said "this sample is to be discarded", the customer does not want to store it long-term

  • So once they're ready to be discarded. We'll take the samples and throw them in to the trash

  • And we simply toss them into the trash

  • pour the whole box in the trash.

  • DESTIN>> That's it? AMANDA>> That's it DESTIN>> And then what happens to it? Like you I really expect you that you're hiding the samples somewhere, right?

  • You're gonna do something crazy with them, right?

  • AMANDA>> We just throw them away. DESTIN>> And they go and they are destroyed at a

  • biomedical waste facility. AMANDA>> That's right DESTIN>> So we're kind of goofing around here

  • but it is important, so she showed me the entire process the samples are consolidated

  • They're kept under lock and key, and they're picked up daily

  • It's legit. So I am satisfied with the process obviously

  • 23andMe knew I would be satisfied or they wouldn't have allowed me to do this, but it was really fun to anyway

  • I really enjoyed the ancestry data a lot more than I thought I would I elected to talk to my dad about it

  • We had a really good discussion, and we actually learned things about our family together. The health stuff is interesting though.

  • It is your responsibility to

  • understand what those results mean and to get a better handle on this I decided to go talk to Dr. Lamb

  • again the unbiased third party at HudsonAlpha. NEIL>> I found the information really fascinating it gave me some insight into myself

  • But I'm... I have a background in human genetics

  • That's my PhD so I got all the nuances I understood what that means and what that

  • doesn't mean DESTIN>> So what you're saying is even if someone does

  • 23andMe and they get that information about their own body, it's important to go the next step and understand

  • what you're learning about your body?

  • That's what you're saying. NEIL>> and to bring your medical doctor into those conversations and to make sure that your doctor

  • understands the nuances of genetics as well. They're a piece of information

  • and you've got to make sure you understand what that piece can and can't tell you and in a lot of cases you have the

  • Decision you can make the decision do I want to even know this information?

  • Or do I want to not look at that part of my report. DESTIN>> Got it okay and to be clear

  • Neil has nothing to do with 23andMe. NEIL>> That's correct, DESTIN>> Okay, so that's an unbiased third-party opinion

  • Thank you for that. NEIL>> My pleasure.

  • DESTIN>> Okay, in summary. I was concerned about privacy. I went to the lab

  • I am no longer concerned about privacy. They've got a good handle on that. You were concerned about the data

  • the benefits outweighing the risks do you feel like it does? TARA>> I do feel like the information is helpful for

  • Society as a whole as well as the individual DESTIN>> Okay, and there's three things you said you wanted to bring up

  • TARA>> I did. One, I want you to realise that just because report says that you have a marker

  • It doesn't mean you're gonna get that means like you're more or less likely to have that trait. Number two

  • only gather the information that you think you can handle so if you think hey

  • I'm not sure

  • I want to know that then then wait. DESTIN>> Some people only do the ancestry thing because they don't want to know those health risks

  • TARA>> Right and three you need to realize that it's a family affair. I mean once you find out your data

  • You're it's really your family's data

  • So you may have to make decisions on whether you should share that information with your

  • Mother and father or brother and sister or whether you shouldn't. DESTIN>> If this is something you want to do you can go to

  • 23andme.com/smarter, get a tube spit in it send it off and get your data back if you want to do that

  • feel free to if not no big deal Thank you to 23andMe for actually letting us more or less investigate their company and

  • being so transparent that was pretty cool. Nobody's ever gone into the lab like that before you think it's a good thing

  • TARA>> I think it's a fun thing yeah. DESTIN>> Anyway, I'm Destin you getting smarter every day. It's my wife Tara

  • That's it. Have a good one

  • Bye. No private or health information about any individual was recorded or shared in the making of this video

  • I am gonna try to vlog for the first time. I'm not comfortable on camera, so this should be pretty interesting.

  • Even in the

  • screen and it's not if I guess oh, I keep looking at the screen you are going to I keep looking at the screen

  • I'm not good at this

  • Okay next

What's up, I'm Destin, this is Smarter Every Day. You've probably heard of 23andme. It's one of these companies

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DNA測試和隱私(23andMe實驗室的幕後)--每天更聰明 176 (DNA Testing and Privacy (Behind the scenes at the 23andMe Lab) - Smarter Every Day 176)

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    林宜悉 發佈於 2021 年 01 月 14 日
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