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