Please Stop Buying Home Genetic Tests | 23andMe Controversy

[@DoctorMike]

Thanks to Ground News for sponsoring this video! Go to www.ground.news/doctormike to subscribe. My link saves you 50% on their top tier Vantage plan, making it less than 5 dollars a month.

[@IllumiTheQueen]

Off topic, Doctor Mike, if you ever read this, can you react to a Houston Jones vid?

[@Macyponner-tc6wf]

Ok so

[@coopa_troopa0192]

hi

[@muzykaml]

The one criticism I'd like to point out is that you assume everyone has access to a geneticist, or even a genetic counselor skilled beyond family planning. I, and plenty of other people in the US, do not. We need to get to a tertiary care center for that. I would love for you to touch on how to pursue this responsibly when one lives in an underserved area. My best option ATM is to pay $500 for a 30x WGS and do the bioinformatics myself. That is not ideal.

[@montyollie]

I can't believe you are hawking Ground News on a video about stolen data... did you know when you sign up with Ground News, you have to click on a disclaimer that says "Add Ground News Bias Checker -- it can -- read and change all your data on all websites". You are literally allowing them to READ AND CHANGE ALL DATA ON ALL WEBSITES"

[@AuDHD_Mom]

Alzheimer's runs in my family; my paternal Grandma passed away from it. My Dad used to really stress over it, and began showing signs of it in his 60's. Then I found a study that showed the more you stressed over it, the worse the symptoms would be. I talked to my Dad about that study, and he agreed to go to counseling. He just turned 70, and while he still gets confused sometimes, it is not nearly as bad as before he went to counseling!! So grateful for that study as it got my Boomer, Vietnam veteran dad finally into therapy!

[@nospringchicken2211]

When I realized my 61 year old sister has dementia, I decided to get 23 and me. No one in my family had it. Sure enough I am at higher than average risk. I also ran it through the Protheses site and I also found protective genes for Alzheimer. I am glad that I got my DNA for the sake of the younger generation in my family. I do not think they should be tested for the reasons mentioned in the video. Like you I believe there are proactive things that you can do to prevent or slow dementia.

[@theedmee]

God bless your dad, and thank him for his service to our country!

[@mkjirak]

I took 23 and me to find out if I had the Alzheimer's gene after losing my grandma and dad to it. It turns out I do, and now I feel more empowered than nervous. Even if there isn't a huge advancement in treatment, I still know to be vigilant so I can make the most of what we have.

[@nospringchicken2211]

I also took an online competency test and scored slightly above average. That was a year ago and I need to do it again but I am waiting for when I am in the mood. It is timed 😟.

[@carlameaders4352]

There are doctors who want to reclassify Alzheimer’s as type 3 diabetes. Now this can run in families and with the push to follow a carb heavy diet, these people have been lied to. I now only eat beef, meat, very little chicken, seafood, fish, butter, and a lot of eggs. My ADD is now gone. It’s simply amazing to have my brain. Yes, my cholesterol LDL is high now but I feel healthy, my brain feels healthy. Did you know that cholesterol is brain food? Yup. Our bodies actually needs cholesterol so much that it makes cholesterol. Knowledge is power and with that you can make decisions for your health. Right now my doctor is upset that I refuse statins. I’m never taking them.

[@Krisorizon]

Genetic tests companies should only focus on ancestry finding and not on giving health advices

[@SpaveFrostKing]

The ancestry findings aren't even reliable. If you take multiple tests with different companies, you get different ancestry details

[@MonkeyJedi99]

More importantly, people need to realize that THEY are the real product these companies are selling. Selling to insurance companies, cops, any who knows who else.

[@Foxtayls]

​@MonkeyJedi99 us, china, various businesses, there is a slight possibility even that bio/weapons/research may buy them too.

[@AIHumanEquality]

To be honest not even that is completely accurate. They can get an idea of your genes but to get an exact % is definitely them making that up. Nothing in genetic technology is that accurate.

[@kelvinluk9121]

Such a business model isnt quite sustainable, it's very natural for them to venture out. And as a layman, it's quite easy to link genetic test with health, and I bet they felt the same and ventured out in this direction

[@eyeglassesstringmusic]

As someone with a PhD in human genetics and publications in top medical journals like The Lancet and JAMA, I actually knew the vp of genomic health at 23andme. The problems are: 1) They sell genetics as medicine before the science is settled. Most diseases are influenced by MANY genes and environmental factors, so looking at just one or a few variants and labeling someone as ‘high risk’ oversimplifies the science and misleads consumers. 2) These tests often lack what we call “actionability” in medicine, where results guide treatment or prevention. Without proper interpretation by a clinical geneticist, most results lead to confusion and anxiety for the consumer. 3) Finally, there’s a big difference between these “fun” tests and clinical-grade genetic testing. The fun tests analyze limited genotypes (think looking at a few letters out of a library of books), while clinical tests often sequence your exome or genome for a much deeper accurate analysis (think reading whole pages or books in a library). Bottom-line: home genetic tests can be entertaining, but when it’s treated like clinical medicine, it can lead to misinterpretation and unnecessary anxiety. Use them with caution!

[@EduardoWalcacer]

My wife was adopted and we have no information about her family health. Is there a valid reason to get properly tested to understand her genetic predisposition?

[@CrescentPaws5000]

@@EduardoWalcacerit sounds like a good reason I saw a KZbin video a few years ago by someone who was adopted and they actually found there bio family members through the ancestry side of it

[@toughbutsweet1]

A PhD and a singer? This guy has everything.

[@maggie7843]

@@EduardoWalcacerI realize you’re asking the poster for advice. I only offer perspective: my mom became an orphan at 18 months. She said if science was better back when she started having kids (1960s) she would have wanted genetic testing to know if she carried bio markers for certain cancers, conditions, etc) so she could know what to be careful of and monitor kids for.

[@meems4378]

Is it the same for sensitivities & allergies testing (at home) kits? I found that it was surprising they even offered them. I know several people who had pretty bad allergies or sensitivities that didn't even show up on the in office tests with specialists. My nephew absolutely has a gluten sensitivity - not full celiac, but it's definitely life altering - when they let him eat gluten, he doesn't poop for weeks unless he has heavy-duty laxatives. At one point they were really worried about how distended his bowel was & whether or not he'd need surgery. He used to scream after eating as a baby (they called it collic) & he was way underweight for his age - one doc even had my sister adding straight butter to her breast milk to add calories to his diet. Then, as he got older, the opposite happened - he put on too much weight, never felt full when he should. It really messed with his ability to tell what his body needed or didn't need - if you have stomach pain all your life, you just can't distinguish being gassy from hunger pains, general discomfort or illness. It was scary. But his tests come back normal - even when they did long-term testing (2 months with gluten 2 months without). So I was confused about how an at-home kit could tell you stuff like that.

[@myfloatingbubbles]

I did a 23 and me test and found out I had 50+ siblings from shady sperm donor practices and my mom never told me until 25 years later 🙃

[@bekanimal]

Are you saying your mom didn't tell you you were a sperm donor baby?

[@jasmines205]

this is the reason i cant be fully against dna testing sites cuz imagine if you were dating your half sibling and had no idea 😥 people dont have the time and money to be paying for full genetic counseling every time theyre with someone. the issue here is lack of consumer protection rather than the tests themselves

[@Yltimate_]

Shady sperm donor doesnt seem like proper context. Shouldn't it be "sperm donor"

[@myfloatingbubbles]

@@Yltimate_ I said shady sperm donor practices

[@urgae9125]

@@Yltimate_this is the dumbest response. Do you NOT know that there are regulations for how much: A man can donate material How much of that material gets used And who chooses to use it We’ve got serial donators out there, and a doctor who SA’d his patients via inseminating them with HIS material.

[@Renofirefly30]

My 23andme genetic test saved my life. It identified the genetic disorder that was killing me. I was sick for over 10 years and doctors said nothing was wrong with me. My genetic test said i had 2 copies of the c282y gene for Hemochromatosis. I had confirmation testing done and my ferritin was over 3,000. It already caused cirrhosis of the liver and was starting to destroy my heart. I now have to see a hematologist twice a week to prevent a liver transplant.

[@brianlewis8722]

Awesome! It's sad to see people throwing the proverbial baby out with the bathwater.

[@shadysfan4life]

I’m very happy things worked out for you, but I’m genuinely curious about something: how in 10 years was your ferritin never tested? Even if hemochromatosis was nowhere near the top of the differential, ferritin testing is very common and at some point you’d think you’d see very high levels?

[@Hristinaandreeva62]

This reminds me My maternal grandma had 3 brothers die at age 1 to 3 years old in the period 1935-1940 in rural Eastern Europe, she believed it was due to allergies but didn’t know much as they died more than 5 years before she was born. In my 23andme test I found out I was a carrier of G6PD deficiency which is carried through X chromosome therefore men will be more affected, this causes specific type of red blood cell destruction and certain type of anemia and jaundice and is deadly to children, the food that causes this reaction is eating a specific type of beans. I told my grandma and guess what she told me her baby brothers all ate this type of beans raw from their garden, right before dying from what everyone assumed to be allergic reaction. Mystery solved, thanks 23andme

[@jfbeam]

It's safe to say you were going to the wrong doctors. (and likely had "the wrong" insurance - i.e. one that wouldn't pay the doctor for any meaningful test(s)) Ultimately, you paid for that testing yourself (via the otherwise quacks at 23andMe)

[@LivPC]

They never tested your ferritin? It's a pretty common ask in blood tests, I'm really surprised 😶

[@AidenLionhearted]

I did the 23andMe testing just for fun. It told me I had a BRCA2 mutation. I never even heard of this mutation. I talked to my doctor and she ran genetic tests to confirm. It was positive. That lead me to taking proactive measures to reduce my risk of cancer. In some way 23andMe saved my life.

[@YaQ1988]

Same happened to my wife

[@TessaBainCNM]

This is so blatantly ad copy, it hurts.

[@AidenLionhearted]

I'm a real person. I didn't copy anything.

[@mxdramapixie]

​@@TessaBainCNMno no, it's definitely not. I have stomach problems docs told me were normal. Came back with a high likelihood of celiac. Talked to my doc, got sent to GI, and guess what??? Gluten intolerance.

[@spheresong]

​@@TessaBainCNMthis is my partner, who I am currently sitting with. I assure you, he is real and his situation is real. Also real is the cruelty of your comment and your attempt to erase his trauma and struggle.

[@vidoexperience8112]

My dad was really lucky- he was adopted on the other side of the country and 23 and me found his half brother! That was a nice thing for them ❤️

[@soulanstreets222]

I found my bio dad by accident with AncestryDNA. He didn't even know I existed.

[@jacobmartinezptx423]

I was able to meet my birth brother and half sister with ancestry.

[@rizkyadiyanto7922]

​@@soulanstreets222you were born out of wetlock

[@byejesper]

that’s why i wanted to use it, my mom was adopted by my grandma we wanted to check if anyone shows up

[@johnschwalb]

I was adopted and my half siblings found me. i didn't even know half of them existed.

[@Joshuabryabt-gf6sc]

My mother has worked in health care for 30+ years, when these things hit the market she absolutely said no, as for if these thing uncovered a potential long term health ailment, you run the risk of your insurance company jacking up premiums, it's only a matter of time.

[@alkanista]

All the more reason for states to forbid that practice before it can happen. If your state doesn't, lobby your representatives.

[@flingonber]

Unfortunately, with genetic information it kind of doesn't matter so much if YOU do it, if enough other people in your family decide to. I've been raising the alarm about this for years but I have a bunch of family members who have done this kind of testing so it's kind of moot point now.

[@johnnydanger8701]

@@flingonber Yup, they all screwed you over. It’s one of the top violations of people’s privacy. Now corporations / governments have insane amounts of data to use against you. Life insurance - Denied, Health insurance - denied. I’m pretty sure that Gov has already use the results to located and convict people based on relatives providing samples. It’s one thing for murderers but another for locking down people who break laws that violate their rights.

[@robertjustinoff845]

You don't have to tell the insurance company that you have had a genetic test done on you.

[@flingonber]

@@robertjustinoff845 That's kind of the whole point, you don't have to tell them anything if the company you got the test with sells them the data without you knowing.

[@Eli_Skipjack]

I took a bioethics class in college. One of the presentations was explaining just how easy it was to de-anonymize “anonymous” medical and genetic data, including several case studies. I was *floored* by just how little “anonymous data” was required to pinpoint someone. After taking that class, I treat my medical, health, and genetic information with the highest level of security. I wouldn’t be able to sleep at night if I knew any of those DTC genetic test companies had my data.

[@felixisaac]

Could you share more about de-anonymoising the data?

[@Jinxo-md2jl]

Bro what you hiding bro, who cares what they have lol worried about the wrong stuff

[@Eli_Skipjack]

@@Jinxo-md2jl Well, first of all, I don't want my medical information in the hands of people who could use that information to discriminate against me. It's not about "hiding" it's about the right to privacy when it comes to my medical information. My response to "what do you have to hide" is be "are you ok with any person, government, organization, or corporation having your medical and genetic records?" If you're comfortable with that, that's fine! However most people probably aren't. I think all people have a right to privacy, whether they have "something to hide" or not.

[@Loner4life20]

@@Jinxo-md2jlif your genetic code is leaked, if someone wanted to cause you harm and not others they could make a disease/ specific attack on your genetic code without it affecting others.

[@MariAnna-nv3gk]

​@@Jinxo-md2jl Who knows, maybe one day it can affect your ability to get a health insurance or the price you have to pay for it

[@ursulawinn]

Here's another fun one. A friend did 3 tests. Here's why. They sent the first one in, expecting something that matched the genealogy tree/research one of their relatives was heavy into for the family. It did not match. The resemblance in parentage was was pretty intense, so they weren't thinking that (looked just like their dad). So, the friend sent it in again. Same results? No. Completely different results including heavy Pacific Islander which is not anywhere, visible anyway, in the family. At this percentage, we'd expect some visibility. So they sent in for a third test with a complaint. The company responding asking what were you expecting. They told the company. The next test was again different than the first two but in line with the stated expectations, sans Pacific Islander. How would you interpret that experience? Medical aspects aside.

[@LoFiAxolotl]

A company relying on bad science with subpar labs did a test on fucked it up multiple times... that's how i would interpret that experience... their focus was never on finding someones ancestry which already relies on bad science or give anyone health advice... their focus was having as much data on someone as possible to sell it to anyone with a wallet

[@Xia-hu]

that they probably don't do any real testing in a lab. The computer just throws some random a** sh*t on you for a 100 bucks

[@madmike987655]

Which company was this? I've done Ancestry (in the UK, can't speak for other countries testing) and have found it very interesting. Everyone who was supposed to come up as a match actually came up and I've had no inconsistencies, that's been the same case for my partner and some other families members.

[@danielgillespie7899]

As a bit of a genealogy nerd and someone who previously worked in the genetics field I would say this. First off the result of one test should match the result of a subsequent test. Obviously. However, a company's estimate of a person's ethnicity will shift over time. The reason for this is that the estimate is based on research. To somewhat over-simplify it they look at particular SNPs (Single Nucleotide Polymorphisms) which are single letter variations in a person's DNA. Specifically they look at single letter locations in the human genome that are known to vary based on geographic origin (most of our DNA is identical to each other so there's little point looking at all of it as that would significantly increase the cost). Now, how do they know what geographic location an SNP corresponds to? They look at all the people who have the variation and where they are located. The location with the highest concentration will likely be where that variation first arose. They may also look at actual scientific research papers into specific SNPs. At best it's an educated guess. And you could have the same variation arise more than once in different locations. So at a certain point in time a company might think that a particular variation corresponds to one location only to later realise that is actually corresponds to a different location, or maybe even multiple locations. As for getting a result for a particular location and a person not resembling people from that location, it's important to understand that most genes don't affect what a person looks like. For example, someone could have 30% sub-Saharan African ancestry but look stereotypically European. They probably won't. But they could. I did a test with Ancestry and it currently says that I have around 1% DNA from the Baltic region. But that 1% was not there when I first did the test and its location has shifted around over the last five years. Originally it didn't show up, then it was central and eastern Europe generally, and now it's listed as Baltic. I uploaded my raw data to another company and paid them a small fee to have them analyse it and they say that I have 4% central European DNA. Why the difference? Because they're working with different research and data sets. So it's only ever an estimate. One company says I have 49% Irish DNA while the other says it's 75%. That's a pretty big difference. But it's because they are working with different research and data sets. The bigger the data set the more likely it is to be more accurate. Ancestry has a larger market share than the other company meaning they're working with a larger data set which means theirs is more likely to be more accurate. But it's still an estimate. Another important thing that many people don't realise is that DNA is not inherited equally from all your ancestors. While it's true that you get half your chromosomes, and therefore half your DNA, from your mother and half from your father (there is an exception to that when it comes to the sex chromosomes but I'll ignore that here because many of the basic ancestral DNA tests don't look at those chromosomes), you do not inherit 25% of your DNA from each grandparent (or 12.5% from each great-grandparent). Chromosomes recombine during gamete formation so you will get more DNA from one of your mother's parents than from the other one (and the same for your father). Often people expect to find certain ethic ancestry in their results and don't. Sometime it's because it's simply not there. But other times it's because they just didn't inherit any DNA from that person (or they did but it consists of the DNA that we all share so there's no way of knowing who it came from). So if someone knows for certain that they have Ashkenazi Jewish heritage, for example, and it doesn't show up that is not conclusive proof that they are wrong about their ancestry. It may just be too far back that they inherited none of it or what they did inherit is the DNA that is shared by everyone. All of that said, different tests with the same company all done within a short period of time should yield the same result (unless their data set has been significantly updated between tests). One way to know if the company has completely botched the test would be to look at what relatives the test matches you against. My Ancestry test has matched me to around 200 people that I know from research I am related to. So I know they didn't botch it or mixed it up with someone else's test. If someone is seriously interested in finding out what their ancestry is I would recommend using a DNA test in conjunction with genealogical research. But know that records only go back so far. For example, for me to find out where the alleged 1% Baltic DNA came from I'd have to go back 6 to 7 generations assuming equal inheritance of DNA (I'd be looking for a 4th or 5th great-grandparent). That would place it in the mid to late 1700's. I've been able to determine which branch that DNA comes from by looking at which of my relatives also show Baltic DNA and determining our common ancestors. In that branch I know who all of my 4th great-grandparents were and who some of my 5th great-grandparents were, but not all of them. It's a work in progress and it could actually be further back than that. Also, infidelity, "illegitimate" births, and men knowingly taking responsibility for other men's children are all things that happen. So just because a man is recorded as a child's father it doesn't mean he was. So sometimes you will not be able to find out where a small percentage of DNA actually came from. If you are going to do genealogical research my best advice is do not trust anyone else's research. Do your own. A lot of people are sloppy with it and just accept anything that looks interesting without verifying whether the records are even for the right person. The sad truth is that you're probably not related to royalty or anyone famous. Your ancestors were probably all peasants. Because nearly every human being on the planet were peasants or similar at one point in time. I am curious which company those tests were done by?

[@diyeana]

I've heard this story before. It's always "a friend." 😂

[@flame_half]

My wife was adopted from Guatemala as a baby and I got her to do a 23andme test. She didn't even realize that she could be connected to family members. We found a full blood sister that lives in Texas. We are incredibly close with her now too. It's been amazing to see my wife get that kind of closure and fulfillment in finding a blood relative. I do think there are privacy risks, but that relationship alone was worth every risk.

[@o0Theresa0o]

I found my biological father and my entire family on that side from doing a DNA test. The potential rewards significantly outweighed the risks for me, and it paid off.

[@vaguelysomething]

I think the point is that they were trying to get him to endorse it for medical effects

[@amiroquet7476]

Well I think the telling a random person where someone else lives, and who they are, and how they're related to you without that person's permission is really weird and dangerous. Of course there are good stories like yours but there are people who do not want to be found and there are people who get creepy and violent even with family members.

[@flame_half]

@@amiroquet7476 you don't have to provide that information at all. There are plenty of people where they are only initials or a single letter. No address or anything.

[@flame_half]

@@vaguelysomething yes, but he was also warning about the privacy risks. Which are valid. I'm not criticizing him at all. You should be careful. I'm just saying that good things come from it. I think it's a net good, not a net negative.

[@nanananananananana00]

we found out my grandma had an illegitimate child in the 60s before she got married to my grandpa because of these tests. my grandpa ended up passing away from cancer before the family found out. (we miss him terribly) but i have an extra uncle and they all got to meet him and his family. my grandma went through so much when she was younger and these tests were such a fantastic catalyst for so many conversations about my family and their lives.

[@luciancastillo1337]

Granny’s a bop 😂

[@marino5652]

So granma wanted it to stay secret, but no, now it is all open in the air.

[@nanananananananana00]

@ it’s a surprisingly common occurrence, ancestry and 23&me are out here exposing all kinds of family secrets and adoptions and stuff.

[@BKScience812]

My aunt took a commercial genetics test because of family history of autoimmunity. The results came back with 11 different pathogenic alleles, 5 of which were dominant, but she had no symptoms of any of the dominant alleles she allegedly had. I warned her the commercial genetics tests were not up to snuff, so she went to an actual genetic counselor who tested multiple members of the family and found no pathogenic alleles except for one which increases risk for autoimmunity.

[@CModelli99]

Yeah, it's pretty insane that companies like 23&Me are trying to pass as anything more than a fun, high-level view of your genetic makeup. At most, I think they could offer some generic insights, such as "X% of people with Y ancestry have green eyes" or "people of X descent are Y% more likely to have high cholesterol," but that's it.

[@tgoddard1988]

Which is why a GENEALOGY test isn't a MEDICAL test. And why they state HEAVILY in their T&C's that their medical data shouldn't be taken as a diagnosis and you should consult a medical professional for that kind of data.

[@w1975b]

Genes are *not* a guarantee of developing any health issue. Many people with different autoimmune conditions are reversing them with diet, specifically the carnivore way of eating (as it should be a lifestyle change, not temporary).

[@samf.s.7731]

Yeah I was hoping to get one for Connective Tissue Diseases and for Autoimmune diseases.

[@InfernosReaper]

@@CModelli99 It's best use has been for people who've found relatives they didn't know about before. That and the novelty of the somewhat dubious ancestry results are all it's really good for. I'm glad I didn't shell out for the healthcare part of things, especially since I know some of the data is taken from user surveys and not everyone's gonna be reliable with filling those out accurately.

[@carolek2422]

My older brother did a test and didn't get the results he was expecting. It turns out my father was not his father. A big shock with no one to ask, seeing both of my parents are gone now.

[@lindarinke6024]

Same thing happened to me,still shocked!

[@alwaysright3943]

Up to 20% of fathers are estimated to be unknowingly raising another man's child.

[@mikebarushok5361]

Same thing happened to my younger brother when compared to my younger sister. And he actually said he wished he had been able to ask our mother about it. Given that she had not said anything about it in the 52 years afterwards, I think that conversation would have been very awkward and disturbing for all parties.

[@edbuell3181]

They’re finding that if a fetus absorbs they’re twin in the womb that the twins dna can be what makes a baby. Maybe I read that on the onion.

[@chrish4439]

​@@edbuell3181 god I hope this whole comment was a joke 🤦‍♀️

[@IzzyKDNA]

Love this video. In a cardiovascular genetic counselor in NYC and I have noticed that these tests lead to so much confusion and misinformation about risk for complex diseases. They can be fun but definitely cannot replace medical genetic testing

[@MonkeyJedi99]

So, they're the astrology of medical diagnostic testing?

[@silverdragon612]

wow its so cool to see you say you are a cardiovascular genetic counselor, I remember watching you when you were applying to schools! congrats

[@BrokenMonocle]

Dangit. I was hoping this could be a cheaper option for me. I had a PT ask if I had EDS, but I've never had the genetic test, and insurance won't cover it.

[@AIHumanEquality]

More information needs to be given to people that nothing not even certified medical diagnosis is going to always be 100% accurate. Nothing in this world is guaranteed so take everything you hear with skepticism (but not cynicism) and use critical thinking to really analyse a situation.

[@bluejedi723]

I tell folks: take the test results with a grain of salt and discuss ALL test results with a real medical professional

[@dieselscience]

I saw a presentation from a man who was arrested and charged with a murder after he and some family members submitted a 23andMe kit. ALL DNA home testing companies give DNA to the forensic database because submission is consent (read the fine print). If that was not enough to dissuade you... The 'match' was less than 40% likelihood but that was close enough for local police. Even though the 'match' was to a third cousin, unknown to the genetic family at the time, while the 'suspect' was in the military stationed overseas at the time of the killing. Oh, and the killing happened on the opposite side of the USA from where the family had always lived. The man had to pay almost $8000 in legal fees to 'win' back his own freedom. Courts will not expunge his record to this day.

[@Aftershk]

Something else scummy Dr. Mike didn't mention: If that's 23andMe's actual website at 7:54, notice how their graphical user interface (GUI) is designed (very likely purposefully) to be confusing regarding opting in or out of consent for sharing. When you're opted-in to sharing your personal data (the default), the button is grey, and says "Opt Out", while clicking the button TO opt out makes it highlighted and say "Opt In". While, I'm sure the company would argue, this is because you click the button to Opt Out, therefore the button says what you're doing if you click it, I can guarantee you many people were confused by the GUI due to being opted in showing as greyed out and saying "Opt Out", as if indicating "Opt Out" is your current setting and sharing your personal data is "turned off", while being opted out by clicking the button makes the button display "Opt In" and light up, as if to indicate you now ARE opted in, and sharing your personal data is "turned on".

[@vulc1]

Very good catch!

[@ngcf4238]

That's what they call Dark Patterns right? Like in Diablo 4

[@anna_in_aotearoa3166]

That kind of subtly manipulative interface design really irks me! Occasionally it can be just a result of poor design rather than malice, but when it comes to choices around privacy, data sharing, push communications & the like, I feel like unethical misleading & manipulative GUI design should definitely be something that countries' consumer protection bureaus/agencies can strongly prosecute? It's particularly predatory on the most vulnerable users (very young/old, semi-literate/numerate, second-language, developmentally impaired etc) which IMO makes it extra-scummy.

[@WhoKnowzTBH]

@@anna_in_aotearoa3166I’ve noticed so many companies that do that at this point I notice but don’t think about it

[@Dan-dg9pi]

I am not sure this is correct.

[@esuohyma]

I’m a genetic counselor and love the points you make in this video! Many of these concerns you mentioned in the video are central to why my field exists - genetic information is complicated and can have lots of implications that people may not consider. Genetic testing isn’t right for everyone and once you know something, you can’t “un-know” it. I highly encourage people to talk with a genetic counselor and/or a geneticist before making any decisions about genetic testing!

[@brownskinbeauty1]

What state are you practicing in? My genetic counselor basically told me to use 23 and me or to be apart of an NIH study because it was cheaper and/or free for the study

[@r2488]

Do genetic counselors take genetic courses or can anyone join the profession? Are you just trained to support people in getting their results or do you have a deeper background in reading and understanding genetics? I’ve always been curious and had a genetic test where I spoke to the counselor but that person seemed to have very limited understanding and made me feel even more confused. It was through a very large DNA company

[@inekerose1968]

⁠@@r2488they take many classes I genetics!! I like to think of the GC role as generally being split just like their names 50% genetics 50% counseling. It is a lot of learning how to interpret tests and also how to support families through difficult results. That being said, just like any medical pro, there are good ones and bad ones. Not all GCs are created alike and it’s possible you got one that wasn’t tiptop!

[@LPChirrup]

@brownskinbeauty I think that's the point for professionals - visiting a geneticist can be an expensive proposition, and one that even people with health Insurance may not have coverage for. Why would they want us to get our information more economically when it takes money out of their pockets?

[@GENNi0606]

Our GC knew very little about our genetic condition and gave false information to family court

[@adamfriedmann9379]

The biggest problem is the lack of laws in the United States protecting online consumer privacy. Seems like a no brainer but money speaks louder than common sense.

[@preacherman01]

The US is stuck in 1985 on Internet laws. Because anytime someone says regulation people say censorship.

[@MrShadowy1]

Well yeah and it's going to continue being a problem as long as we, the consumers, are the commodity being sold to advertisers. We are too valuable to let go of.

[@beva901]

There are actually many laws that protect consumer privacy in the US. GPP Global privacy platform is the standardized encoded method of protecting consumer privacy according to their preferences. Some states are opt in. Some are opt out. But the US privacy regulations aren’t that wildly different from GDPR which is what Europe abides by. I’m in no way saying this is enough because while Europe was first to the game I’d say their attempt at protecting privacy was lackluster at best. Same goes for the US to be fair. But to say we are behind or have done nothing is categorically false. Also to understand the mechanics of how to ensure consumer privacy is upheld is actually extremely complicated. Online companies have a variety legitimate use cases for having user data. Sharing it is another beast but since the invention of the cookie the infrastructure of information sharing has snowballed into something that’s virtually irreversible. So we can blame the folks who invented and implemented them in 1994 and ran rampant with the concept. Not the folks who have the impossible job of reversing that mistake now.

[@cyan_oxy6734]

​@@preacherman01 When the EU made laws that websites have to ask you to steal your data nearly EVERYONE was annoyed. I don't think most people even have any clue how much of their personal info is being freely traded. Giving your DNA to a stock company that could get acquired by anyone is even more bonkers to me.

[@PeachJellyJam]

Yesssss. Cybersecurity professional here. I'm SO glad you're bringing attention to this. Keep it up, Doctor Mike!

[@canuck3169]

A friend of mine took a DNA test, only to find out that he had an older half-sister that no one knew about. Turns out his Dad, who passed a while ago, was never told by the mother that she was pregnant. His mum (who met the father long after the 1/2 sister was born) has passed away too, so as an only child this was exciting news. They now visit each other

[@brandonguild1666]

Yeah my dad discovered an unknown cousin this way also.

[@Squishypeng_art]

2:33 Mad respect to you for doing the right thing and not feeding the internet incorrect info

[@kevinluce1473]

As a doctor should, he a real one for that. He care about his people and his patients not the money and big companys

[@christina7706]

I’m a pre-med student and was really interested in DNA. Last year I decided to get an ancestry test out of pure curiosity. It revealed that my parents weren’t biologically related to me and allowed me to know more about where I come from and contact my bio mother. My ancestry test did not involve many health insights but it did reveal parts of my life that I am very grateful for. I think ancestry is great for finding your origins as long as you aren’t looking for definitive health insights, or any health insights at all.

[@GlenCokeCo]

Thank you.

[@GummyDinosaursify]

I agree with this, I don't really care about the health stuff, I'm more interested uploading my DNA to potentially help with missing person or unsolved cases and maybe find some distant relatives since at some point, there were divorces that the older members of my family refuse to talk about. I thought the health stuff was interesting, but nothing I can't already figure out by simply talking about my family history to my doctor.

[@DogsAreTheBest312]

I’m adopted and the only reason I got a genetic test was to see if I’d get lucky and find any relatives (I’m adopted from China during the one child policy. My birthday is an estimate.) closest they found was a 5th cousin, which is useless for finding family 😂

[@christina7706]

@@DogsAreTheBest312 jeez that sucks. I was lucky and my bio mom had taken an ancestry test so I had direct contact with her!

[@Lqtech00]

Did testing a few years ago and family skeletons came tumbling out, but I ended up with a ton more relatives that I didn’t know existed. It’s also educational as a Black American to see my genetic makeup. I wouldn’t invest in the super fancy subscription though.

[@river6013]

I’m currently in the process of getting my master’s in genetics, and this was a big topic in one of my recent classes. You’re spot on for what was discussed

[@Texascowboy68]

My Grandma did an ancestry test and it was by a company that doesn’t offer medical advice, it just told her what countries our family originated from, that’s it.

[@Acatapoltergeist]

The fear is what data they actually collected (beyond what they told you) and who has and will have access to it. If your grandma’s DNA is accessible to law enforcement for instance, you can be incriminated if your DNA is present at a crime scene. It just opens up so many avenues for falsely incriminating or target you for medical/health scams. Knowing what people are or will die from is a very powerful tool of manipulation. And one person’s data breach exposes an entire family. There are probably more consequences to be seen as well. The more extreme “thinkers” worry about forced sterilization programs with these type of data for instance

[@LoFiAxolotl]

They also are now selling your Grandmas data to everyone with a wallet

[@Xia-hu]

they still have your grandma's DNA information to sell to 3rd parties.

[@babycarl9585]

​@LoFiAxolotl i bought his meemaws data to make sure I can clone her in my underground lab 😈😈

[@robo7643]

​@@LoFiAxolotl I didn't buy the Grandma's data

[@ThatGuy-vi8ch]

I'm not a gambler, but giving your DNA to strangers for an answer you're assuming is true seems wild.

[@adelebrown1861]

​@GlenCokeCo yeah but there are things like this that you can just choose not to do and it wouldn't affect your life whatsoever

[@whinybritches]

@@GlenCokeCo Vaccines? One of THOSE people in a Dr Mike thread??

[@turbokid8719]

Don’t worry they already got your dna from hospital visits or clinic visits

[@DTFauxClassic]

​@@GlenCokeCoThis is just being a contrarian for the sake of it. Of course everything's technically a gamble, but some dice-rolls objectively have lower risks vs. higher rewards, and contingency measures to mitigate the poor outcomes.

[@maksimally]

@@GlenCokeCo vaccinnes and driving don't store your personal information god knows where and does with it god knows what.

[@Oxaca73]

I took one DNA test for ancestry/family tree info and then, later, took the 23 & Me because I'd heard people talking about it. My ancestry results came back with the same info from both companies. 23 & Me actually had fewer connections for my family tree, presumably because a fewer number of relatives used that service. The health results just said I was at a higher risk for heart disease and diabetes which I already knew and doctors have been mentoring for years. In hindsight the 23 & Me test wasn't worth it but I'm still glad I took the first test because it connected me with a number of relatives I wasn't aware of.

[@ff-td6xn]

In Germany it is actually illegal to offer DNA based health testing. I can see why, but I also see the value to some extend. I have had crippling health issues for the last 10 years or so that no doctor was willing to properly look into, since it was easier to declare it to be psychosomatic. About 4 years ago out of pure curiosity I did a DNA test to find out about my heritage. Had I been able to get the health based tests here, I would've realized years earlier, that I had a very rare genetic condition and could've saved myself from irreversable organ damage. In countries where health care and treatment is easily accessible, there is a very scary tendency of doctors not going the extra mile for their patients, since anyone can show up for the most menial things, which makes doctors a lot more skeptical and in turn makes it harder for you to get real help in niche cases, so these tests can have some good uses.

[@lukag3155]

The concept of health in 23 Former Doctor Truths book by Lauren Clark completely explains this. I wish I read it sooner

[@amarraa.l1]

Thanks for sharing that

[@amarraa.l1]

I heard about that book before

[@8O0I0O8]

This sounds like an advertisement

[@Ginam3939]

@@8O0I0O8it could be but also their just sharing information they read about. It’s not like they weren’t into major details.

[@ayseejupi]

Bot

[@awestphal40]

My aunt is a state prosecutor. She told me to never ever ever do one of these because of government overreach and privacy.

[@kme9861]

If you plan on committing any felonies where DNA may be used as evidence she is absolutely correct lol

[@heartsky]

^^^^ This right here!

[@MephiticMiasma]

@@kme9861 Criminals have been found because DNA was a close enough match in these databases to indicate it was a family member... so yeah, not only do you have to avoid it, you have to make sure no close family member does, either lol

[@google_is_a_criminal]

So glad I never feel for this corporate scam !

[@samhavoc1066]

"Government overreach". Seriously? The threat is corporations and hackers. They're the ones abusing your info. If anything, government was lax in this regard.

[@Krisorizon]

I'm glad Dr Mike is talking about such issues which are usually glossed over by mainstream media

[@perryelyod4870]

Why would you criticize your advertisers?

[@Becky-eo7cx]

I did one and found out I have a genetic blood disorder. Told my doctor and they did tests to confirm it. Sure enough, it was positive. I never would have known.

[@alkanista]

But, according to Doctor Mike, you are irrelevant. Because you don't fit into his set of prejudices regarding home DNA testing.

[@lwood432]

Same here. I recently went through breast cancer and found out I was at risk for blood clots through this test. If it wasn't for this test I would currently be taking medicine that has a risk of causing blood clots.

[@LadyLithias]

I remember my first home DNA test kit. I was contacted by a university that was doing research into the psychological impacts of DNA testing, particularly surprise results. I was quite confident in my own family tree, and it was fine to be a test subject. Funny thing was that my "first" results supposedly showed that I had a large part of my lineage from Africa. Didn't bother me a whit, but was surprising. The last time I checked those early results, it had suddenly switched from what I did NOT expect, and now reflected my actual genetic heritage. Later on, I did the 23&me genetic tests, and found it interesting that it didn't detect the critical genetic deficiency I had confirmed by a genetic test through my health care people.

[@myrealnamedoesntfit]

They don't show all the data. They have added a few things here and there every year, but it's definitely not a full list. You can, however, download your raw data. The info is there. Not sure if there is a simple way to decide it or not, other than using Ctrl+F and searching for specific genes?

[@michellebaker6302]

One of these tests informed me that my sister and I were besties with another set of sisters and we were second cousins! Same great-grandparents! And our common family is in another region of the country than either of us so it was not like we were all in the same community. The chances must be astronomical. The full story is WILD but one of my biggest blessings in life.

[@mattymerr701]

Hmmm

[@OkyLegacy]

Love that! I've learned that I have relatives all across the US due to different branches of our family migrating from Ukraine and Russia at different times periods. It's been super interesting.

[@drrachelann]

Amazing video! I'm a geneticist and I have been sharing these concerns for years. I've also corrected friends and family on their interpretation of their results. Most of the confusion comes from the lack of information from the companies, but a lot of it is due to poor general science literacy.

[@itskaaitlyn29]

the apps explain very thoroughly that none of it is an accurate predictor because of the huge margins or error. there’s even multiple detailed reviews you must complete before even seeing your result. so it truly is just terrible science literacy. gotta remember most people barely passed those classes in school

[@nicolekent9518]

Thoughts on genesight pharmacological test?

[@TakenTook]

@@drrachelann -- the other concern is life insurance and health insurance companies discriminating against people down the road because of what shows up in the testing, whether or not it is actually a valid predictor of disease later on. My biggest fear is that GINA and the ACA will be destroyed by Congress, taking away a little protection the public has in that regard.

[@IceBlueLugia]

Honestly I’m baffled that anyone really takes it seriously, there are so many disclaimers that it’s not medically accurate

[@mnxs]

​@@itskaaitlyn29When have you last read the T&C's of anything in great detail? Or just clicked "accept"? Many, many people just see some text they have to read before getting to the "good parts" and just does their best to click it away. It's idiotic, yes, but it's reality. Very few companies make a good design effort to actually make sure that this info is conveyed properly (because it doesn't make them money). So the problem is that probably quite few people are actually properly informed, including because actually, truly understanding how & why that the "test" is largely useless without further, proper testing, requires some level of scientific literacy that is unfortunately beyond most people (and it sorta makes the company look bad, which is another reason they wouldn't make great efforts to explain it all).

[@outsideaglass]

Thanks Dr. Mike. I just went and deleted my 23andme account. 2 years to get fully deleted from third parties sucks, but that's better than my just leaving my very important information out there. Thanks for bringing this to our attention!

[@audaxfemina]

I used to work for a company that did genomic testing for prenatal screening as well as inherited cancer, cardiac, neurological and endocrine risk. My complimentary testing came with a genetic counseling appointment to discuss my one low-penetrance recessive allele that had any risk. I felt reassured. Then again, my degrees are in molecular biology, so I'm not your average consumer. :)

[@inorudreamer]

As a South African, I am always so happy to live so far from the big hubs that I can’t afford these trends. Ofc it’s sometimes frustrating, but it has helped me avoid some bad buys.

[@Starry.does.stufff]

I’m also South African and I agree so much!!

[@SilkwoodFam1999]

Everyone in the world should do them so that they will know that everyone is related.

[@buildinasentry1046]

Same bruh. I’ve thought about doing these before but I know either it’s gonna be too expensive, or it’s gonna get lost in our shocking postal system

[@Goldfish_1313]

@@SilkwoodFam1999no thank you. I have seen too many movies to give some company my dna

[@tadpole5862]

Thank you!!! I said this for years and have been called crazy. I knew I was right and never backed down and never stopped warning friends and family. Thankfully no one in my family did it.

[@kilipaki87oritahiti]

You know not everything is a conspiracy right?

[@Pumpkin0_0]

@@kilipaki87oritahiti You'd be surprised.

[@Pomagranite167]

My auntie was thinking about it and I said, girl don't, because that's my dna you're giving away too. Do more research. I don't think she ever did do it.

[@poogissploogis]

@@kilipaki87oritahiti But this one literally was lol stop being so naive

[@myrealnamedoesntfit]

​@@poogissploogiswhat's the conspiracy?

[@Dodogssaywooforruff]

Thanks for this. I was just talking about this with a coworker, "weird that my phone supposedly doesn't listen, but yet this video came up right as I talked about it." I wamted to do it purly for fun, but seeing the privacy risks has me concerned, so I think I'll pass on this one.

[@Lion1010NT]

Thank you so much doctor mike, yesterday I was browsing through 23 and me to thinking of purchasing one of there plans, so I could learn what things im at risk of and if I have any ancestors I don' know about, this was yesterday around 8:00 and you come in clutch with this video. Thanks.

[@EmMendiola22]

Thank you for covering this! When I did one of these tests 10 years ago to find out my ancestry, I deleted my information once I received my results. Many people do these for fun but don’t take proper precautions and forget about it. If only companies were consumer-friendly. I wish every doctor was like Dr. Mike! Thank you for sticking to your values and refusing to promote unethical products!♥️

[@Xia-hu]

hopefully your information really got deleted, cuz you can't take that for granted...

[@EmMendiola22]

@Xia-hu You’re right! Wishful thinking- it’s crazy what companies can get away with.

[@Lady_Amelia-Eloise]

Companies are consumer friendly because if they violate consumer trust they can face serious legal consequences

[@virginiabrady3536]

Lol, you think hitting delete does anything? No. It doesnt. What this dr didnt say is how dangerous it is to have your dna floating around. Or the fact that one sister was ceo of utoob, other 23 me. Im sure its simply a coincidence. And that law enf has direct access to these results, the ultimate invasion of privacy yet they make you think hey guys try this, its cool. No. Never do these. Bioweapons can and are formed this way.

[@TakenTook]

@@EmMendiola22 -- you might have deleted your information on your end, but it does not mean the company has deleted it on their end.

[@Somebody2687]

23 and me has had privacy issues since the beginning, this went into news cycles years ago.

[@machetedonttweet1343]

Here's a good real-world reason to opt out of all Genetic Sharing. A friend of mine took the test and opted into the "Relatives Match" feature. Turns out he had a 30 yo daughter he knew nothing about"(she took the test too and contacted him). He is trying to include her in his extended family. But he is living under the threat of "Back Child Support" in his young senior years from a one-night stand.

[@NarwahlGaming]

Yeah. If you have _any_ sort of wealth, relatives will come out of the woodwork. Even if you're poor when you take the test and become wealthy later in life.

[@creatuitiveguru]

That's ridiculous if he knew nothing about the child. It was the mom's responsibility to tell him. If she didn't do that, then the buck stops there.

[@mcnaugha]

This sounds like a morality driven thing with a ridiculous hope it’ll stop extramarital sex. I’m pretty sure in my country, once the child is either over 16 or out of education/training after 19, then it’s time up. The purpose is to see the child into adulthood and self-sustainment. Maybe it’s possible to sue for unfair hardship during parenting a child or one’s own childhood but if someone had a reasonable childhood experience then it’s just punishment.

[@HollyJordan15]

@@creatuitiveguru😂 I’m sure that’s not the only child he fathered.

[@Michelle32218]

​@@creatuitivegurunot in the good ole USA. The mother holds that card over him till he dies or she and the child both do. Regardless of age. Welcome to family court it is a broken system.

[@DangerPinsX]

I took 23 and me for health insights since I found out my paternal grandma had Parkinson's. So I learned that I'm super white, my eyes will go bad(der) and that my mom had a half sister she went 60+ years without knowing about and we got to connect with that half sister's children (she passed away a year prior) and it was one of the most wholesome, uplifting, amazing things that's ever happened in my extended family. My mom loves spending time with her new nephews and nieces and they were so happy to finally fulfil their mom's life long wish of finding the family she never got to know. So I mean, some good came out of the $200 my mom spent on me for my birthday that year.

[@shiftling]

Yeah I found my birthfamily.

[@Narxes081206]

I have been an outspoken critic of these! Glad to see you're speaking out on this.

[@TakenTook]

Even for necessary genetic testing for medical purposes, I always warn patients about the possibility of their data being used at some point by an insurance company to discriminate against them. Even though the GINA law is still in effect overall, and the ACA is still in effect for health insurance, if that information gets out a life insurance company could potentially decide not to cover somebody or rescind a policy, or an employer could choose not to hire somebody, or find an excuse to fire them before they become expensive to the company. And although medical insurance companies cannot currently refuse coverage based on medical history, if the Republicans destroy the ACA like they have been threatening to, that protection goes away as well. And sending your DNA to a for-profit company that may or may not guard the information, is definitely something to think very carefully about before doing .

[@ejake1]

My thoughts exactly.

[@TakenTook]

@@ejake1 -- GATTACA was a science fiction movie at the time, but honestly it's more like the "speculative fiction" that Margaret Atwood writes, because it really does involve technology that is within our reach already. I'm thinking they should require people to watch that movie before they send their DNA off to a for-profit company for entertainment purposes.

[@aquachonk]

BAM! Spot on. Buckle up for 4 years of WTF.

[@eb7713]

​​@@TakenTook Yep! I was thinking about Gattaca too. Scary stuff! 😮

[@TakenTook]

@aquachonk -- reason number 397 why it is so important for us to all be calling our 1 rep and 2 senators, making sure they know we expect them to vote in ways that protect the ACA, protect Social Security, etc.

[@emmabobeck98]

Thank you for speaking about this. This has been a difficult question for me because I am adopted from India to Sweden. I did this test to possibly find any biological family. But I and other adoptees still have the problem that we don’t know about medical history when we go to a doctor. I thought this test would give me more but the only thing I got was like 90% risk of celiac disease, which I got diagnosed for as 7 hahah. So not very usefull. And also the risks of hacking is very scary. And it was also very expensive.

[@yamo_chan]

I did the 23 and me testing. Was curious like most. I weighed the pros and cons. Read all the fine print. And felt ok with the risk (I’m not American as well, so I wasn’t worried about insurance and such). Despite the data breech and all the points in this video, I’m still glad I did it. Confirmed a lot of things I didn’t know prior, that was common in my extended family (found out when I shared the results with said family). And also foods to avoid because of the possibility of increased risk in getting some ailments (apparently seaweed is a no-no. And found out many of my family members have been told by their doctor to avoid it as well due to complications). I love seaweed! So that was good to know. They have many, many warning throughout the process to not request certain results as well if you are prone to anxiety or have any fear of seeing the results. I definitely think it is not for everyone and you should really think it through, but I still say go for it if you really want to!

[@NarwahlGaming]

Eww! Who looks at seaweed and thinks to themselves, _"I'm going to put that in my mouth."?_ Now, if you'll excuse me, I'm going to finish my chilled money brains...

[@TheLizwillis]

This test lead to me being the first one in my family to find out about mine, my mom, sister, and other family members having the BRCA1 gene. My sister was able to be screened and found out she needs to have a double mastectomy. I’ve had a preventative hysterectomy/double salpingo oophrectomy and am planning my dmx in the near future. I’m thankful to know and I’m grateful for this test.

[@tracyschiff3669]

Since the rate of cancer with this gene is high (about 80% of those with it develop breast or other cancers) and the cancers occur at younger ages, I'm surprised that no one in your immediate family had cancer and that cancer occurred early. (Within 30-50 as opposed to over 60). Did your mother have any sisters? Or your grandmother? Did any of them have cancer, not just breast? Just curious.

[@reid3031]

I used Circle DNA, which was entirely medically focused with barely any ancestry focus. I didn't know it was an option for me to talk to an actual geneticist. That seems like a really good follow-up. Thanks.

[@remitiras]

Watching this just reminded me I got my BRCA results back from the hospital and I'm negative for all the types they checked so ty for that.

[@EmaanFatima-x2c]

Dr mike is a total bundle,gives accurate information and useful information,is funny and comical and is a treat to my eyes❤

[@burnttoast385]

Yes he is so informative.

[@wilmawilliams3518]

Your treat to my eyes comment made me smile. It's true. 😂

[@myrealnamedoesntfit]

Bots be crazy for Dr. Mike to like their comment.

[@rogersoard1971]

Doctor Mike how you slid right into an ad for Ground News was very slick.

[@RustCole01]

If other sponsors were smart, they would allow the ad reads to be that short. Nothing motivates me to NOT buy a product, more than a long sponsored ad that is heavy on corporate language. But letting creators slip a clever guerilla ad into the video without disrupting the video makes me much more inclined to try their product at some point.

[@Chop-sloppy]

Thank you, Dr. Mike! I was just counseling a friend the same, and can now point her to your video, too. In this age of uncertainty, it’s best to keep your DNA, and all its secrets, close to home and safe from whatever (and whomever) may not care about you a wit~ better safe than sorry for sure!😊

[@jacobn275]

I actually just gave a presentation on this in my health ethics course. So interesting to see you make this video!

[@Brien84]

It was helpful for my family. It led us to a link between our background and BRCA gene. Most of the women in my family have all had either breast or ovarian cancer.

[@littlebitwitchy]

I found out this year that I have Heritery Hemochromatosis. I went to my Primary Care Provider who did blood work. She noticed something off and then sent me to a Hemotologist. They did the genetic tests.

[@benzaiten933]

I'm from Europe where such tests exist, but they're most certainly not allowed to advertise about any dubious 'health' claims. so while I'm mildly curious to learn about my genetic ancestry, and might have bought a test to this purpose, I'd have never expected this to give me some insight or warning about a possible medical condition.

[@kme9861]

Correct. It’s fun and has correctly identified family members. But medical advice or taking it serious is crazy 😂 it’s $99. What are people expecting?

[@dawnclabaugh3598]

They keep sending me requests to participate in research. But took away all the information that was helping with family tree. So, NO to that.

[@starbock]

@DoctorMike - Hi Dr. Mike, thanks for an informative video. Around 6:46, you noted that 23andMe isn’t a healthcare organization and therefore isn’t subject to HIPAA requirements in the same way hospitals or insurers are. While that’s factually correct, it implies these entities protect consumer data as most people assume. In reality, HIPAA was intended to expand industry access, not limit it. When Congress failed to spell out strict privacy and security rules, the very group seeking broader data access was tasked with defining them-a clear conflict of interest. I appreciate your commitment to educating viewers, and I hope you’ll consider clarifying this point in future content to prevent perpetuating a false sense of security about HIPAA. Thank you for all you do. 🙏

[@Monika-mb6jh]

Not sure where you’re getting your info from. But HIPAA clearly states what can and can’t be done. Even if originally they didn’t plan for it to be limiting, it is. You can get in serious trouble for releasing patient info without permission, which protects patients. These companies don’t have any of that so they don’t offer that protection.

[@DynamixWarePro]

I took a DNA test in 2021. I didn't do it for any medical advice as if I wanted any of that info, I'd talk to my doctor first. I took a Ancestry DNA test. I wanted to find out about my grandfathers family as he was illegitimate so no father was mentioned on his birth certificate. He died before I was born so I never got to meet him. None of my dads family knew much about my grandfathers family either, so I wanted to find out who his family was and I thought taking an Ancestry DNA test would be the best way of doing it. While I was a little concerned about the privacy, I have ended up learning so much about my ancestors that I never knew before. I have got in contact with lots of closer and slightly distant relatives I never knew I had as well and been able to prove we are related through documented evidence, so it defiantly helped on that regard.

[@Kal93baby]

Thank you for this comment. I was adopted by my great uncle and aunt but never met my bio dad or anyone on his side because he died before I could. I've always wanted to do a dna test so I could find out a little more about his side and even see how much of my dna matches with my adoptive dad too

[@fairfathom]

I think ancestry is fun for the family history side ( that's why we did ours, and it did really help with knowing which countries to start searching in because we had little records for the one side of my family ) but I definitely know people who found out that the "neighbors" actually were half siblings and another who found half siblings in another state. Crazy world...

[@wordzmyth]

* Definitely

[@DynamixWarePro]

​@@Kal93baby I have noticed quite a few of my DNA matches say on their profiles that they were adopted and looking for family, so its a good way of potentially finding who your family are. For me, I haven't yet found that much info to find my grandfathers family. I was able to find out the person listed as present at the birth of my grandfather, he was living with her and her husband until he married my grandmother, so he might have been adopted by them. I also found her maiden name matched the surname of my grandfathers mother listed on his birth certificate, so they were probably related. I am still trying to find who she was. I was also able to find who my grandfathers only sibling, my great-uncle was as I found his birth certificate. The person it said was present at his birth, I got a 4th cousin DNA match to a direct descendant of hers so that helped, especially knowing her maiden name and finding a number of DNA matches with either that same surname or they have trees with direct ancestors with the same surname. I still keep hitting brick walls but it was a useful step in the right direction.

[@Lady.MD67]

I found two cousins through 23 and me, told my uncles and they are now getting to know there adult kids! It's going well.

[@PorchGardeningWithPassion]

Thank you for posting this! Most people do not realize the risks of these and this video lays everything out very clearly.

[@piangfuann]

As someone who has a MSc in Genomic Medicine (University of Birmingham in UK), this is what I have written in my assessments including the ethics of accidental findings. There has also been discussions in class where GPs and other doctors have been bombarded by the results. Genomics and genetics is very important field which plays an important role in healthcare at least in the UK. NHS has many qualified and board certified genetic counsellors and genomic scientists so if patients have concerns about their health, talk to the GP or a specialist. They can definitely refer you to the genetics unit especially if you have family history and clinical presentation of things that may have genetic components associated with it. Furthermore, more importantly cancer is a multi factorial disease, genetic disposition is one of them. However, scientists have not been able to have all the biomarkers and genetics mutations for all cancers and diseases just yet! There is new discoveries are happening all the time which makes an incomplete picture of your genomic landscape. I just finished my Ph.D in Medicine and hopefully will be publishing stuff soon (still it’s just one part of a complex disease : there is a reason why there is a paper called “Hallmarks of Cancer”). Bottom line, Dr.Mike thanks for talking about this :) it is a great video :)

[@indieaj7]

My sister in-law found a sister she didn't know she had that her father denied just because he didn't want to be involved in her life as a child. Then he finally fessed up, now her and her sister have a very close bond and travel together while having a common enemy. I've known these DNA testing kits were sketch but man Ive seen a lot of positives come from it. It is unfortunate.

[@cijmo]

We did 23 And Me because my brother is the last male in our family and my dad's side were all at odds with each other so we got back in touch with some we didn't know about. They're all very old now but three of them (plus my dad but he's gone) spent the war in a little town in Wales and it's nice hearing what they remember. It also matched us up with some cousins that I met in 1980 but they don't remember. I was so focused on finding the family members from my dad's side, I don't even think I looked at the medical stuff. No surprises on our heritage though, really.

[@zackrice9395]

I’ve always been on a fence about these/ I was close to buying a few times but never did. I appreciate you doing the research and putting out the information for us.

[@TheRightNathan]

I'm not a physician, but I did spend several years as an active gray hat. I was given one of the genetic kits as a gift and was at first enthusiastic to see what it was all about. But reading the UA completely turned me off. I had reservations about giving my DNA (essentially my unalterable human MAC address) to a commercial entity to begin with, but the fact that they reserved so many rights to any data provided in perpetuity for themselves and their assigns, even surviving the Company, was a major red flag no-no.

[@LarissaGoodrich1]

I’m NOT a doctor but I warned everyone too! This video is informative!

[@PorchGardeningWithPassion]

Same! I told my family not to do them and have me get sucked in by proxy.

[@LinusBerglund]

I warned everyone, but one relative did not heed my warning and sold out the rest of the family.

[@Lady_Amelia-Eloise]

@@LinusBerglundthey didn’t “sell out your family”

[@iliveforelysia]

​@@Lady_Amelia-Eloise they did lol

[@RileyHighBerg]

how dare you! You didnt warn me! :( (I'm just joking)

[@strangersontheinternet]

I literally bought one for Christmas for my sis 😭 now I feel bad and it was like $100 Edit: thanks for all the replies

[@ommo1th]

Don't use her real name and don't opt in for dna relatives and she should be fine. The info is nice and you can download the raw data to check the individual genes (to see what variants you have)

[@MihailMihaylov0708-2]

ITS FINE U CAN GIVE IT TO ME IF U WANT

[@Bluecrystali]

Whatever you do, don't give it to the person above me

[@slimmjesus1424]

why feel bad? its an awesome gift!

[@newera478]

Whatever you do, don't listen to anyone in this comment thread.

[@me4hitashito]

I did this. They came back with some info on medical that was wrong. They said I wouldn't develop it, and I already had the health issue. Two in fact. I wasn't there to find out medical. I wanted to know where I came from. Being adopted there is no info about what you background is. This was the closest thing I could do for my children.

[@intelligentpopsical412]

Same, also adopted: I had zero clue of a family history. I've had Dr's dismiss health concerns because "you don't have a family history of that, so it's unlikely, we don't need to test for that" and insurance was the same way. I don't have a family history of anything! I did it trying to get a "baseline", and maybe connect with a relative that know, not as a 100% accurate .

[@fairfathom]

Adoption is a great reason for these to exist... one of my friends was adopted and found out that their best friend (younger, lived in the same neighborhood and also adopted but younger by about 2 years) was actually their full-blooded sibling- mom AND dad. Absolutely bonkers, as they were adopted from out of the country! the odds of ending up as neighbors half a world away from where they were born...we are still shocked.

[@4203105]

Unless it's a very simple thing with one SNP causing the illness like in Hereditary hemochromatosis, it's only ever an estimation.

[@0114855]

They said you wouldn't develop it? Or that there was a low risk of developing it?

[@EeveeTinna]

My bf is adopted from Asia to Europe, and there is no available info on anything for him, he just knows he was put for adoption as soon as he was born, and the documents only state the last name of the mother, which became his last name and the hospital gave him his first name (before adoption). Although he wanted to know more about general health traits, which I told him it would be an estimate and not something to take as 100% truth. We got the test very recently, it is not even in the lab yet, and I had no idea about this until now, nothing was showing up about it when I Googled. I knew about privacy risks of course, but not the controversy. After this info I will put even more ephasis on not taking the health "traits" as whole truth (he wouldn't bilndly trust it anyway) but I will get him to talk to the doctor on possibilities. I also took the test as I want to know where I come from, my family, although I am not adopted, literally knows nothing about our history, and barely know the name of their grand-grandparents. I already know my health issues from my immediate family so I don't think it would tell me something, and if it did, I would just go to the doctor rather 🙈

[@EmergentStardust]

My DNA test actually helped me identify a rare skin condition that my dermatologist missed. Pretty grateful for it.

[@Stalemarshmallow]

My brother and I have been trying to warn my family about this for YEARS. Thank you!

[@alfonso365]

Bill Burr: "Why would you send your saliva into the internet?"

[@carolajoy4432]

You can’t send your DNA to the internet. You send it to a company

[@RezaQin]

Based Bill right again.

[@bekanimal]

because I was adopted

[@maeannengo4908]

3:48 Another reason that will fuel people's distrust with the FDA

[@harryschmidt4465]

Thank you Doctor Mike. In the first minutes you brilliantly laid out a situation in which more information is not better. This is counterintuitive but needs to be taught more broadly. It would help many people reflect more deeply about the information flood coming in and how to manage it.

[@vulpzin]

I wasn't expecting a video about online genetic testing, really graceful with you doing that. I would suggest a video about telemedicine and online therapy...

[@maryford3243]

I really like having telehealth appointments. I do my therapy that way.

[@Laurie03]

I’m not in the medical field and knew right away not to do this, I was worried about my privacy and accuracy.

[@clearhaven]

Who mentioned accuracy? The results are accurate, it’s what you do with them -that is the issue being discussed here.

[@novaoddity]

@@clearhaven Accuracy 100% matters here. Those companies have literally had privacy breaches and are completely misleading their consumers. The accuracy matters because after you take this test, you might get a result that says “High Risk” for Cardiovascular Disease and Cancer just because ONE person along your family line had it, without taking into account your lifestyle. These tests are not done by genetic specialists. They do not understand the coding and extensive history that actually goes into genetics such as: hereditary, health factors, and patient history. In conclusion, this is NOT reliable at all, this is dangerous and a stupid, desperate attempt to monetize people’s health further for the sake of their company. Maybe watch the video before commenting and you would understand that. Edited for grammatical purposes.

[@michaeleineke6086]

@@novaoddityexcept the results are accurate lol. They don’t base it on 1 singular person and just say “yup good enough for me they’re high risk”

[@Anonymous4045]

I'd especially hope even if you did do this, you'd use a unique and strong password + 2fa.

[@LoFiAxolotl]

@@clearhaven Accuracy is absolutely a huge topic especially since they rely on bad science

[@DirtyDog97]

7:30 That 23AndMe is not supposed to share data without a customer's opt in consent and whether they will or not could easily be two different things. I don't trust their promise to honor a customer's lack of consent. Nor do I trust that a request to delete would actually result in the data being deleted.

[@luciancastillo1337]

It’s in the small print

[@DirtyDog97]

@@luciancastillo1337 It doesn't matter what the print says. They can just violate the print.

[@mgichndz]

I did Ancestry years ago. It showed me all of the regions I already knew of, and THEN pleasantly confirmed a region I had suspected. Annoyingly, over the years most of those regions are now gone and my genetic make-up now is almost completely different. Smh

[@vampireprincess4620]

as someone who worked at a company that developed the equipment that performs the DNA sequencing.. speed to market has become way more important than accuracy of results.. as someone who spoke out about it too much i got let go in a round of layoffs what a surprise

[@H_enry_]

I wish you brought up that it's not just your genetic data you're exposing but all of your close relatives and family.

[@TakenTook]

He mentioned it an indirect way when he talked about how police have used this data to find criminals. Quite often they have DNA from a crime scene, and then they search the database of known criminals who have had their DNA collection ordered by the court and find nothing. But then they go to these companies like 23 and me and try to do a family match -- which some people just do for fun to see if they can find some distant relatives -- and they end up finding a relative based on the DNA. Then they will work backwards from there and combine it with some surveillance to figure out which family member is the criminal. But yes, it would've been nice for him to have stated this explicitly also.

[@victoriatheis6552]

@@TakenTook Currently, only GEDmatch and FamilyTreeDNA allow sharing with law enforcement, and that is with consent. I have allowed law enforcement use of my DNA for use, because I support the DNADoeProject and DNASolves. Not that I expect to be picked up in any search (tiny family, most deceased), but if it could help a family find an unidentified person years later, I'm happy to do that.

[@blair4youu]

he.. did?😭 i think he insinuated it pretty wel

[@yooookki]

I think it's pretty cool if you're not hiding anything ... a 2nd cousin found me a few years ago and reached out through FB. She was the product of an affair and never met her father before he died in 2005 ... he was my great uncle, and his daughter was a spitting image of him. I'm grateful for that connection.

[@TakenTook]

@ -- People are not always hiding a crime. Sometimes they have escaped their biological families because of abuse. Hopefully people who are running from dangerous relatives or ex spouses will know better than to use one of these DNA companies for entertainment purposes, but you never know.

[@jenniferjensen8538]

Yikes! I wish I had known all this 5 years ago when I did a 23 and me profile! 😳 I did get suspicious when they wanted me to answer a TON of personal questions for a health assessment or some such nonsense. I did NOT participate in that! But thank you for bringing this to light! While it was cool to learn about my ancestry, I think I will be removing data!

[@EmiliaOliveira-l9s]

Dr Mike is a complete package that provides all types of medical information whatever the health problem may be. ❤

[@Krisorizon]

I rarely see doctors talk about such topics. Thanks Dr Mike 👏

[@vironx22]

Thank you for validating my concerns on this. SO glad I didn't sign up for 23 and me (the one I looked at)

[@Alan-lv9rw]

I found out I’m 50% Scandinavian, 30% English/Irish, and 20% German/Dutch. But I already knew that before the test.

[@Shadow__133]

As an adopted person, 23andMe provided me with valuable information I otherwise would never have had access to.

[@adzizi]

My biggest concern is for them to have data of my DNA. I'd rather dont know my ancestors then giving my DNA data to foreign unknown companies.

[@toddhensley880]

4:41 this is a common method of getting data. Please don’t reuse passwords! Use a password manager and randomly generated passwords.

[@margonaut]

The insurance companies would love to deny coverage for genetic factors.

[@stevensnow2855]

Knew it, didn't finish the video but I knew it!...."continue watching"

[@MelissaMSwarrior24]

Wow thanks for this info Dr Mike! I just recently bought the test and now I'm going to return it and speak with my Dr!

[@kimjackson1052]

About the breach, I was reading that initially around 1,400 accounts were hacked, but because of the 'share with' feature the hackers were able to get into the seven million accounts.. that scared me away from even thinking about doing any of those home tests!! Or sharing 😬

[@AshleyHankey]

My DD stuff got breached never made the news it was that much or higher

[@PeterCoogan-m3t]

Once you realize that the results are based on who lives in a place now, you realize that it's not about the past, it's about how you resemble the current population of a place

[@alenarohava3009]

Genuine question: why is it so bad that someone would be able to have access to my genetic information? I’m not from US, so I don’t really care about the insurance companies, though I totally understand why people would be worried about that. But other than that I honestly don’t see any issues with my information being out there. It’s not like there are some evil geniuses who would develop some sort of weapon to target me specifically based on my DNA.. Idk, maybe I’m missing something here 🤷‍♀️

[@lengarion]

Eugenics. We think we live in civilized times, but people within my grandparents time got killed in my country for a condition I have, and that my child has. We have no idea what the world is going to be like in our grand children's time.

[@ThyriaSharin]

Thanks. It's good to know that my initial distrust was warranted.

[@leek5682]

It's pretty disheartening when you realize that over half of the biotech industry is really just playing pretend to secure investor funding. People without the fundamental skills to analyze data and read/understand privacy policies have to rely on other people who can, like Doctor Mike! You're doing a good thing

[@youonlytubeonce]

So glad you got Ground News as a sponsor. I've been a paid subscriber for a couple years now. What a great fit! I think your missions align almost perfectly.