DNA Testing and Privacy (Behind the scenes at the 23andMe Lab) - Smarter Every Day 176

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A special thanks to Dr. Neil Lamb at the Hudson Alpha Institute for Biotechnology. A major mission of Hudson Alpha is to educate the public and promote genomics literacy. I talked to many scientists about Genotyping but Dr. Lamb's ability to break down the complexity of the human genome is what finally brought it home for me. Hudson Alpha provides many opportunities for Genomics Education and

Genotyping and Sequencing are very different:

The 23andMe Genotyping service is provided by LabCorp
According to their website, LabCorp is "The World's Leading Health Care Diagnostics Company"

No Private or Health Information about any individual was recorded or shared in the making of this video (This video is HIPAA compliant).

A special thanks to the Lab Manager Amanda Douglas for being a complete science rock star and a great person to work with I spoke with about a dozen LabCorp Employees who are under Amanda and every one said she was an absolute joy to work for. I know my experience working with her great and I hope her boss reads this blurb I wrote down here in the video description and gives her a high five and a big fat bonus or something equally as awesome.

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Ambiance and musicy things by: Gordon McGladdery did the outro music the video.
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Warm Regards,

Destin

[gabgornitzky]

I’m sorry. I just find it really ironic that one of the biggest dna testing facilities is in Alabama.

[smartereveryday]

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.

[MrWynterpaladin]

When the guy says, "Welcome to the Institute" I got Fallout 4 flashbacks.

[jchrizzy]

That elbow bump was further evidence that Destin is an omniscient being, with knowledge of future events

[jeagle]

8:13 - Destin says, "This is like from the future!" 8:17 - Uses Windows XP...

[Phoboskomboa]

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."

[LiftPizzas]

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.

[Norse_Code]

"Welcome to the institute"....Wait a minute ive heard this before

[ahmedm]

8:12 _"This is like from the future"_ . Three seconds later..
8:15 Windows XP running in the background 😂😂😅

[AS--]

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.

[loungingcat]

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.

[jennhoff]

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! :(

[Tetzuoe]

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.

[repomandan]

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.

[xKarma_]

"you're hiding this samples afterwards huh"
Amanda: *His on to us*

[xbenedikt]

And they got hacked and the data exfiltrated. So much for privacy and security.

[NBFman]

2:25 - "Welcome to the Institute." Destin better watch out for the synths

[BobWidlefish]

At which step does the CIA get a copy?

[dureemarie]

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?

[TornacenseDeFuturo]

7:05 it's nice how you put those uniforms and then a delivery guy just enter with normal clothes ;)