23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

About what?

Privacy?

The blog entry is focused on monetization, not privacy.

23 also has a deal with Pfizer.

And they have hired people, e.g., from Genentech, that will help them try some drug discovery research themselves.

But does anyone outside the company seriously believe this is going to lead to anything? They are not a therapeutics company.

They are a data broker.

Why not just submit DNA samples directly to a drug company instead of a data broker?

The only thing we can call "shoddy" here is 23andme's original business model: selling genetic test results. The question some are asking is whether they knew that when they started.

With the collected data, they now have value. There will be buyers.

Whether that value is ever passed on to patients is less certain.

> Do you really compare DNA and phone numbers?

I think you've let the prior context of the discussion influence your interpretation of my point. My comment had two two main points. First, that we've never really had a system where transactions did not convey some additional information about us, our preferences, and the market (what's more, "my data" is an interesting and often under-explored topic, IMO. If data wants to be free, and you go spreading it around, do you really have a singular claim to it anymore?). Second, there are competing interests of the individual and society when we are talking about aggregating data that might yield substantial benefits for people in general (as in the human race). We've made considerations about this before, such as with vaccination.

I'm not making a case that a private company should be able to keep all info about your genetic makeup and profit from it privately. I am taking a position that we should carefully consider the possible benefits of aggregating genetic info, the possible downsides in loss of privacy and other possible problems, see if there are ways we can increase the benefits and/or decrease the downsides, and try to make an informed decision, with the minimum FUD possible.

Not before we actually know what those considerations are. It's prudent to error on the side of caution, but erroring on the side of caution doesn't mean we ignore the issue after that. If there's serious public good that can be brought about, we should investigate that and explore ways it can be achieved acceptably.

> one reason I haven't sent a DNA sample to 23andMe, etc., is because I can't control what happens to my data after that point, and I'm not even sure if I can find out.

Yes, and I agree with this outlook. When I said it would be a good thing to legislate, I meant that we should investigate ways we can implement clear rules such that we can all benefit from the useful medical information while protecting privacy as much as possible. We already do this to some degree in the US with HIPAA laws, which facilitates the sharing of client medical information between medical professionals but also comes with a bunch of very specific safeguards and requirements.

That these 'results' have not been verified for accuracy and are largely fictitious? That's why the FDA shut them down for providing such reports/predictions. Nobody has proved these reports are valid or useful in any way whatsoever.

http://csmonitor.com/Technology/Tech/2010/0915/How-reliable-...

>In July, a report from the US Government Accountability Office presented at a congressional hearing on genetic testing roiled the waters. The GAO found that direct-to-consumer (DTC) genetic test results were "misleading and of little or no practical use to consumers." As a test, the GAO sent identical saliva samples to four leading companies. It found that disease predictions varied widely, "indicating that identical DNA can yield contradictory results" from each company.

If you'd like to send me $100 I'd be more than willing to provide you with pages of sciencey looking reports as well.

Oh god I hope you are not serious. These services are not clinical diagnostic tests and shouldn't be used as such for a thousand different reasons.

Genetic counseling is serious business. It should be administered by a trained professional in a medical setting. The results of any genetic tests should be interpreted by a trained professional.