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please-stop-buying-home-genetic-tests-23andme-controversy

Please Stop Buying Home Genetic Tests | 23andMe Controversy

genetic testing kits promised us a futuristic look into our DNA all with the Simplicity and convenience of a box delivered right to our front doors but what happens when the companies behind the promises start to implode from misleading Health guidance to shocking privacy breaches consumer genetic testing failures are starting to pile up in this video we'll dive deep into the dark side of consumer DNA testing Expos the cracks in the science including my own personal experience and unpack the fall out from the recent 23 and me debacle and huge thanks to ground news for sponsoring this video Consumer Reports warns while these tests can be helpful some may find their results troubling these home testing kits initially gain popularity by promising to give you some information about where your ancestry stem from you probably know how it works at least at the basic level you spit into a plastic tube mail it off and then a few weeks later you get a DNA Report with information about your background inherited traits Etc early on like many others I was curious about my own Origins and actually reached out to one of the big companies to partner up and help me investigate but in the middle of the project they abruptly shifted their focus from my family tree to the bigger Financial pie in the game Health insights they wanted me as a doctor to promote at home genetic Health testing this was new to me so I needed to look more deeply into what was being offered when I dove in and actually looked at their data I found that the health insights they were giving were usually in complete or completely in actionable for example how valuable would it be to know that I'm at low risk for developing type 2 diabetes should I be eating more unhealthy now or another one how useful is it to know that I'm at high risk for developing Alzheimer's disease is really no action I can take given that result and now I'm forever scarred with that anxiety-provoking news then came all the issues for cancer testing it seemed like that home testing kit was a legit test to rule out genetic cancers but in reality they were giving me results without testing all the potential mutations and sequences to make it a truly valuable test to use in L proper genetic counseling to me this form of Middle Ground entertainment desk testing only created more confusion and certainly didn't replace a true meeting with the genetic specialist so I killed the deal and I've been very wary about these type of tests ever since in fact I've warned numerous patients and loved ones for years about the potential issues and today turns out I was right almost all my concerns have come to life with the recent disaster at 23 in me despite my early negativity of the industry 23 and me started as a huge success story once valued more than 6 billion dollars the 18-year-old company basically launched an entirely new industry supplied data for studies on genetically influenced diseases and helped cops solve cold cases but lately things haven't been going so well all of the company's board members quit and the company announced plans to lay off 40% of its employees and discontinue its Therapeutics division which had been working to develop cancer drugs why well let's start with the fact that the science doesn't live up to the hype of the marketing initially the FDA actually banned 23 and me from selling tests that included health information because they couldn't reliably predict disease risk the FDA said consumers were being misled into thinking their results were clinically valid and also that the test results were too complex for people to interpret on their own I actually agree because for example if you were interested in genetic planning let's say or ruling out a genetic condition these tests were not a replacement for a proper medical grade test and visit with a geneticist sadly the FDA was pressured into backtracking on this ban saying 23 and me tests came with clear enough disclaimers for consumers to know that the reports are basically just for fun and shouldn't be used to make medical decisions okay sure there are disclaimers but the marketing for these direct to Consumer genetic tests is really good so good that even if companies don't say take your results seriously people still do do I have a cancer that is genetic do I have a heart condition that's going to kill me in my sleep actually if you're worried that you're genetically predisposed to a serious disease whether it's a cancer a neurod degenerative disorder or anything else with a hereditary component then your first move should be talking to to a doctor not buying an at home test then the hacking began last year hackers were able to access genetic data for almost 7 million 23 inme users criminals broke into the accounts of people who reused usernames and passwords on previously hacked sites those hackers were then able to steal files with ancestry info for those who've opted in into a DNA relatives feature that allows related users to automatically share data with each other hackers basically got access to your entire family tree and for some reason specifically went after users with Chinese or ashkanazi Jewish ancestry and then sold that data on the dark web while this hack affected a lot of people it actually wasn't the worst case scenario they got profile information but thankfully they didn't steal the full genetic codes there's even more risks to discuss but first as you can tell I went deep researching for this video a lot of which was done on ground news an app and website that combines the world's news in one place allowing me to compare coverage and verify sources of information remember when I said 23 and me had cut 40% of its Workforce and ended its Therapeutics Division I actually read that story on ground news which provides so much more insight to the story than just the words in the article for example they show me that over 50 Outlets have covered this story the bias distribution of the coverage so I know if the story is slanting in One Direction politically and the factuality rating that tells me how trustworthy these sources actually are I love comparing the coverage to see which Outlets are sharing each other's reporting all of which helps me form the most accurate opinion on what's happening in the news their blind spot feature is also pretty great in that it can show me stories that I may have missed and fill in critical gaps of my understanding of a story like this 23 and me story actually has almost no coverage from conservative media Outlets making it a blind spot candidate for people who follow those Outlets Echo Chambers are huge no no go to ground. news/ Dr Mike or scan the QR code to subscribe now my link actually saves you 50% on their top tier Vantage plan the same one I use making it less than $5 a month it's also their biggest discount of the year so check them out today or even gift it to a loved one all right back to the genetic data probably the most relevant concern I have is about thirdparty data sharing 23 and me isn't a healthcare organization so they're not required to protect your health info the same way hospitals or even health insurance companies are AKA no Hippa it's allowed to share user data externally and can even change the sharing policies at any time originally 23 and me share genetic data with other companies and institutions unless users specifically said they couldn't by default they were sharing your data without you even knowing thankfully this policy did change in 2018 and now you do need to give consent before your data goes somewhere else but there are several types of consent you can agree to let the company share your your data with all third parties like insurance companies and big Pharma one positive thing here is that health insurance companies can't deny coverage or charge people more based on their genetic testing results genetic discrimination has been prohibited by federal law since 2008 but that's only health insurance in many cases companies that sell disability or long-term care insurance are allowed to factor genetic information into their policies now if you don't consent to all thirdparty sharing you could still agree to let 23 and me share your data with researchers for studies this can allow you to participate in research with your data pulled into a group or let researchers use your individual level genetic data both pooled and individual level data are deidentified using a code or algorithm before being included in research to help protect the user's identity however some genetic privacy experts say it's theoretically possible for users to be traced back to their genetic data in general these privacy risks related to at home genetic tests aren't new but they're getting a ton of attention right now because of the 23 and me spiral what troubles me most is if the company goes under or gets sold who will own all that genetic data their user agreement states that if the company's acquired user data will likely go to the company that buys it and if that happened the new owner could keep their current privacy policies or it could change them it would be their choice right now privacy laws at about 12 States would require customers to give consent before 23 and me could transfer their data to a new owner but Most states don't go that far and there's no federal law to that effect so what can 23 and me users actually do for starters remove consent from all types of third-party sharing the other critical step is deleting your data ASAP the website actually has instructions on how to do it one caveat though 23 and me outsources its genotyping to labs and they are obligated to keep customers genetic info as raw data with their sex and date of birth for a couple of years before deleting it so it's not instant my advice here before you share genetic data with any company think really carefully if it's worth the potential risks review all user agreements and consent policies with a magnifying glass and consider asking your doctor if a proper geneticus referral is better for you your DNA is the most personal data you have it's not just an identifier it's who you are why do we get hiccups and how do you get rid of them click here to learn that and as always stay happy and healthy [Music]

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