Ok, so I am certain you are all aware of the big hulabaloo surrounding good 'ol Mark Zuckerberg and Facebooks' plans to sell user provided content to companies.........The FacebookOSphere was up in arms!!!!!
Here's my question? Why in the hell do you care about that Drunk Photo more than you care about the information contained in your genome. That Drunk Photo is only a snapshot of your poor decisions at 21, easily explained away. But your genome? How do you explain away an APOE e4 genotype? What about a Huntington's Genotype? Familial Hypercholesterolemia?
I hope you see where I am going. Once your information is online and once you sign a terms of service which says I'm ok, you can end up with this.
To be clear, it's your choice. "We never sell data" without customer consent, Avey says. For personal data, customers consent every time they volunteer for a drug manufacturer's research project. But 23andMe will not notify customers every time they sell genetic data; in that case, a customer's initial consent -- given when first signing up for a 23andMe test -- suffices.
Mark Zuckerberg learned the hard way when he had millions of customers. Maybe since, 23andME doesn't have that kind of user lobby yet, they won't feel the pressure. But since they are already selling customers' genetic data to any one they please, the pressure won't be felt until they have already made millions......
Oh and BTW, User provided content is granted a worldwide, non revocable license to 23andME too........(That certainly smells awfully close to ownership to me).......
With the exception of your saliva sample, 23andMe does not claim ownership of the materials you provide to 23andMe (including feedback and suggestions) or post, upload, input, or submit to the Service (collectively "Submissions"), unless otherwise specified. However, by posting, uploading, inputting, providing or submitting your submission, you are granting 23andMe, its affiliated companies, sublicensees (including but not limited to sublicensees who avail themselves of the Limited License granted in Section 6 above) and successors and assigns a nonexclusive, worldwide, royalty free, perpetual, non-revocable license to use your Submissions in connection with the operation of their Internet business, including, without limitation, the rights to: copy, distribute, transmit, publicly display, publicly perform, reproduce, edit, translate, reformat, and create derivative works from your Submissions.
Imagine if Zuckerberg had asked his Facebook fanatics to agree to this one!!!! He'd be outta business in a heartbeat.....
It's funny how the rules only apply to certain companies......
I am amazed that all of these technophiles like to verbally assault me about how I feel about 23andME, yet most of the field feels THE SAME WAY about Facebook and some stupid drunk photos or illicit pics......And both companies are saying "just TRUST us" but with Terms of Service like that, how can you???
I guess it's a case of the "A-Rods"..............more people in NYC cared about that than the Stimulus bill signing.....Sad.....
The Sherpa Says: When will people realize that selling your information shouldn't be taken so lightly. It looks like Drunk Pics mean more than SNPs......that's because of public health illiteracy. We should focus on health and physiology not sex-ology in health class.
7 comments:
You made an excellent point here. There is surely a lack of education on the implications of DNA testing.
Daniel MacArthur is in full support of the DTC companies. Why does he not answer your question since it is obvious that he must be sleeping with the CEO's of all of these companies.
@ Anonymous,
I will let Daniel state his support and positions. But I seriously doubt he is sleeping with Dietrich Stephan, he is a family man. Just like Linda Avey and Anne Wojiciki.......
-Steve
You've repeatedly said 23andMe is selling/will sell people's data without consent. Who is 23andMe selling customers' genomes to? You should definitely be specific if you have this information. It's a moral imperative.
@ Tara S.
You should ask Linda Avey who. That is their trade secret. In fact, I don't think they even let their users know who they are selling to......
I can't tell patients about the other patients that I see......so why should they tell their users?
Oh, wait.....I am bound by law.....they are not.
-Steve
p.s. If you don't think they are selling it, then why is it in their terms of service and why do the "consent" you for an unlimited ability to sell it? Boilerplate???
Always a good point around data rights. The problem is that here, the main issues people had with Facebook were not around them selling those rights, but what happened to your data after you canceled your accounts and the ambiguity of content ownership on pages where an "add to Facebook"sign was put in. So we aren't talking about the same thing.
Here are Facebook's current ToS (the ones they reverted to after the brouhaha)
"By posting User Content to any part of the Site, you automatically grant, and you represent and warrant that you have the right to grant, to the Company an irrevocable, perpetual, non-exclusive, transferable, fully paid, worldwide license (with the right to sublicense) to use, copy, publicly perform, publicly display, reformat, translate, excerpt (in whole or in part) and distribute such User Content for any purpose, commercial, advertising, or otherwise, on or in connection with the Site or the promotion thereof, to prepare derivative works of, or incorporate into other works, such User Content, and to grant and authorize sublicenses of the foregoing"
Not so different. No one is up in arms over these. So the argument presented here seems to be somewhat off base
I agree.
Have you noticed that the url of the forum inside the community is "phenotype"? Are they analysing the post in the forums to get info about phenotype.
Other thing. Have you seen in the FAQ what they said about using it with minors? it contradics their terms of use.
Luis F. Luque
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