Thursday, January 17, 2008

Social Networking Wants a Piece of You…Literally

There was a sensational article in the Globe and Mail yesterday. Siri Agrel wrote about how emerging niche family tree social networks like GeneTree.com and 23andMe.com are collecting DNA samples to provide ancestral analysis to its members. Registered users order their DNA kits online and send in cheek swabs so that they can meet distant relatives and start relationships with them online.

Based of the hypothesis that bloodlines are an attractive common denominator that will draw thousands of people together in a warm and fuzzy online relationship, the networks offer all the fixings one might expect at an online family reunion. Chatting, photo and video sharing and blogging of family memories are all part of the deal.

The idea of using DNA to trace your ancestry is not new, online kits have been available for a couple of years now. The DNA Ancestry Project was one of the pioneers in the field but now the concept has been catapulted into Web 2.0. DNA Ancestry Project’s GeneBase.com has captured over 500,000 users since its launch.

Two overt hurdles faced by the new network are the questionable accuracy of the data returned to the customers, and the obvious implications of how a little bit of information (that may be incorrect) may lead to serious litigious fall-outs within the user base. The following disclaimer is available on the GeneTree website:

“4. GeneTree’s Disclaimers and Liabilities.

4.1 GENETREE DOES NOT WARRANT TO CUSTOMER: (A) THAT THE SERVICES PROVIDED BY GENETREE WILL MEET THE EXPECTATIONS OF THE CUSTOMER; OR (B) THAT GENETREE’S SERVICES WILL BE FREE FROM DEFECTS OR FREE FROM ERRORS.

4.2 FURTHER, IN NO EVENT SHALL EITHER GENETREE OR THE CUSTOMER BE LIABLE TO THE OTHER FOR ANY INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE, OR CONSEQUENTIAL DAMAGES WHATSOEVER. “

23andMe.com was created by Anne Wojcicki, wife of Sergey Brin and its business has a couple of tiers. On the one hand it is collecting fees from the DNA kits it sells to the public, and on the other, it services the “medical research field”. While I did not chase down the exact nature of the services it provides to the medical industry or the revenue it generates through it, here’s an excerpt from the site’s Terms and Conditions:

“One of 23andMe's goals is to contribute to scientific research and the advancement of genetic knowledge. To achieve our research goals, 23andMe may enter into partnerships with commercial and/or non-profit organizations that conduct scientific and/or medical research.”

“Please be aware that under certain circumstances personal information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants, or orders. In the event that we are legally compelled to disclose your personal information to a third party, we will notify you with the contact information you have provided to us in advance unless doing so would violate the law or a court order.”

The cleanest of the bunch appears to be GeneBase as they destroy the DNA samples immediately after they have been analyzed. But according to their “Modifications to the Agreement and the Service” section of their T&Cs, this could always change…

“Genebase reserves the right at its sole discretion to modify the site, these disclaimers, this agreement, and the terms and conditions of this agreement at any time. Any changes to this agreement will be reflected in this section of the Genebase website. If you continue to use Genebase services after a change is posted to the Terms and Conditions section of the Genebase website, this means that you have accepted and are bound by the changes.”

What baffles me is that amidst the global outrage of privacy and security issues caused by social networking in general these days, novelties like Google global maps illustrating users sharing the same genetic markers are able to entice hundreds of thousands of people to literally give a piece of themselves to what some might call an information abyss.

All of the sites go to great lengths to explain their security measures. The reality is, security is very difficult to guarantee. Below is a very small list of databases containing sensitive information that were hacked or compromised online. While financially based information may have more obvious tangible effects, I'd hate to be on the receiving end of "wooops, someone has your DNA profile" - talk about identity theft!

AOL data scandal
UK Child Benefit Scandal
US Regional Bank Hack
AT&T Hack

On a less harmful, but generally annoying note, sharing information with a commercial medical research company could easily be interpreted as sharing DNA profiles to a pharmaceutical company. While the contribution to modern medicine may be a fringe benefit, the larger, meatier opportunity for sites to monetize their data would naturally be found in DM databases. So, if you’re genetically predisposed to diabetes, you might one day find yourself subtly embraced by ads for sugar-free candy and over the counter drugs that just happen to address some of the symptoms associated with this condition.

Are you willing to give a piece of yourself?

3 comments:

Anonymous said...

The concerns about releasing DNA profiles should be just as important as the release of any other personal information like credit card numbers, social security numbers, etc. Furthermore, it would be important to know exactly which DNA profiles are being collected by these companies and whether or not other parts of a person's genome are being examined or tabulated. Are clients privy to the types of analyses being done on a person's DNA? Are they guaranteed that only regions of uncompromising information content are being sequenced or otherwise characterized? What happens to remaining DNA after a sample is screened? There is lots of room for additional ethical conflicts to arise from these practices.

Sonia Carreno said...

Thanks for your comment. It sounds like you're versed...Here's an excerpt from one of their letters to the "scientific community":

"...At 23andMe our mission is to help our customers through that process, providing them the information they need to interpret their genetic data in the context of the latest scientific findings. Our service combines genotyping with a set of tools and features that depict each customer's personal data within the context of environmental and other factors that contribute to variation in human traits and conditions.

We invite you to review both the standards we use to determine whether a particular genetic association is robust enough to include in our service and the statistical methods we use to illustrate for customers how their particular genotypes relate to the incidence of a disease, condition, or trait. You can also see a list of the associations we currently report in our Gene Journal, along with excerpts from the scientific content that will be provided to our customers."

I'm not aware of any limitations to the type of analysis they perform.

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