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23andMe Is Terrifying, But Not for the Reasons the FDA Thinks: Scientific American


Stashed in: Privacy does not exist., Advertising, Awesome, Ethics, Quantified Self, Medicine, Google FAIL, internet, science, Sergey Brin, Self Test

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But as the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.

Sound paranoid? Consider the case of Google. (One of the founders of 23andMe, Anne Wojcicki, is presently married to Sergei Brin, the founder of Google.) When it first launched, Google billed itself as a faithful servant of the consumer, a company devoted only to building the best tool to help us satisfy our cravings for information on the web. And Google’s search engine did just that. But as we now know, the fundamental purpose of the company wasn’t to help us search, but to hoard information. Every search query entered into its computers is stored indefinitely. Joined with information gleaned from cookies that Google plants in our browsers, along with personally identifiable data that dribbles from our computer hardware and from our networks, and with the amazing volumes of information that we always seem willing to share with perfect strangers—even corporate ones—that data store has become Google’s real asset. By parceling out that information to help advertisers target you, with or without your consent, Google makes more than $10 billion every quarter.

What the search engine is to Google, the Personal Genome Service is to 23andMe. The company is not exactly hiding its ambitions. “The long game here is not to make money selling kits, although the kits are essential to get the base level data,” Patrick Chung, a 23andMe board member, told FastCompany last month. “Once you have the data, [the company] does actually become the Google of personalized health care.” The company has lowered the price of the kit again and again, most recently from $299 to a mere $99, practically making it a stocking-stuffer. All the better to induce volunteers to give 23andMe the data it so desperately wants. (Currently, the database contains the genetic information of some half a million people, a number Wojcicki reportedly wants to double by year end.)

Why would a Board member be so open about this kind of privacy intrusion?

Admitting to being the "Google of Personalized Health *Care*" is not admitting to selling data.  I wish Gammy would weigh in.

Long article and a bit old but worth the read. If checking a box drastically changes the interpretation of results how useful is it? 

As always what are they selling? Seems like information as power, but bad information is delusion.  

If they are are not making money what are they doing with the information they convinced you to pay them to gather?

http://discovermagazine.com/2008/sep/20-how-much-can-you-learn-from-a-home-dna-test#.Up3jaqa9LCQ

Great article!    Thanks so much for sharing, Mark.

I suppose the simple premise explaining 23andMe's popularity is this.<“There’s a paradigm shift from intervention to preventive medicine as we speak,” he said. “It happened when people started to download information about diseases. This didn’t happen before. Doctors used to be omnipotent; no one ever questioned them.” Knowledge is power.> 

The only problem with that statement is it untrue, in a deceptive kind of way.  I have spent my entire adult life working in health care and witnessed the shift. 

The question on the patient intake form has changed

Are you currently on any medications?

To

What medications are you currently taking?

If any normal person sat and read patient files they would be ill and scared beyond belief.  You have no idea what your friends, neighbors and driver in the car next to you are taking. 

The paradigm is to sell product and the best way is to create demand because you Might have this problem in the future and you Must take this to Prevent it. 

Does anyone really believe you have such and such gene and are not going to get ads to address it in your feed?

Why not assume that consumers will become better informed about medications?  

Because all medications are addictive on multiple levels. 

Personal example, I have an autoimmune thyroid issue. I was on thyroid supplements for many years.  Test once a year and take everyday. About 8 years ago, I had better access to testing working in a clinic so I had some more comprehensive testing. Long story I quit taking it. My thyroid function was getting worse. Every year a higher dose which is a normal corse 

You will not find one piece of information anywhere that does not say what I did was stupid and dangerous.  There is zero counter argument to taking thyroid probably in increasing dosage for the rest of your life 

8 years later my thyroid function is in normal range. 

I have treated many cancer patients, most are gone.  Only one refused treatment, she has multiple myeloma and by all accounts should be dead after a decade of non treatment.  

There will never be the counter factual evidence of non treatment. It is always MOAR!  (There was one great study on treatment vs non treatment for end stage lung cancer where non treatment was better in quality and quantity of life.  However there will never be a study on treatment vs non treatment for stage II cancer.)

I personally have opted out of the medical.  There will be no treatment for non symptoms based on a one time blood draw, nor will there be scopes and scans.  

My medicine is Mantra, no one is going to enroll in chemo vs mantra. 

Humans have survived for our whole existence without pharmaceutical and in 60 or so years we can't live without them, of course billions of people do live without them everyday. 

Let me re-state (I wasn't clear): Why not assume consumers will learn that all meds do more harm than good?

atypical antipsychotics

After the FDA approved their expanded use (2005? I think) their use exploded. Abilify, with their little cartoon ads and doctor office push over doubled its sales up to about 5 billion. 

Seroquel is in the same league and like abilify in top 5 or 6 in terms of sales. 

Of course in terms of written scripts 137 million for hydrocodone.  It kills 45 people a day (heroin kills 8)

Watching people become addicts was a haunting experience. I, like 2 Md's I worked with, quit because they couldn't take it anymore. One became an addiction specialist.  I won't work in hospitals any more because I can't help people on those drugs and 9 out of 10 were on one or more. 

Long stories but if we find a "depression gene" (many depression patients will constantly point out family history) we can expand the meds to everyone like statins.