Your questionnaire responses and genetic information will be used for genetic research. One of the main goals of TruGeneticsâ¢ is to develop a unique research database for conducting genetic studies. Your decision to use TruGenetics'â¢ services indicates that you are willing to contribute your questionnaire responses and genetic information to the TruGeneticsâ¢ research database. [...] TruGeneticsâ¢ may conduct this research, or may partner with another organization, including non-profit and commercial entities, to conduct research. TruGeneticsâ¢ may charge a fee for conducting research using this database.
You will not benefit directly from contributing your information to the research database. However, important discoveries might be made through this research, and this might significantly help other people. If these discoveries are validated and accepted by the scientific community, we will provide you with this information as it pertains to your genes. This research may also lead to the development of a commercial product. You will not receive any payments if this occurs.
Very interesting game. It is called gmail. It could be a game changer. But, we have seen how Celera did with the build a database game:.....
P.s. There is no good business model here, just hype.
DÃ©jÃ vu - this was the "business model" of the internet boom days, give away services for free, build up a massive customer database...then sometime in the future make some money out of it. That last part was never realised.
I think though there is something to say for the proposed, or possible, research using a large (100,000+ rather than 10,000) customer base. There is the opportunity to gather more environmental information (diet, exercise, medications etc) than the GWAS studies are able to do. Also the research would be prospective. All that assumes though that the customers will play ball and keep on answering the questionnaires, etc, which is unlikely given past experience
PS - I signed up too, but i fear that it will be only for US residents
I knew you guys would know:-)
The other difference is that, at least in it's immediately available (i.e., accessible without registration) materials, 23andMe is more explicit than TruGenetics about how it will handle data for research purposes. For instance, from 23andMe's Consent and Legal Agreement:
Prior to embarking on any such projects, 23andMe will establish a research advisory committee to guide such collaborations. 23andMe may grant researchers associated with partner organizations access to aggregated data from our database of genetic and other contributed personal information for specific research queries. 23andMe will only provide individual level data to external researchers upon individual consent from each customer. In addition, we will ensure that such research partners obtain clearance from institutional review boards, as appropriate, and agree to maintain confidentiality consistent with our privacy statement
Steps like prior IRB review and approval are arguably important prerequisites for any research in this field. Of course, in light of recent developments at certain private IRBs, there may be reason to question the effectiveness of such protections.
I've signed up as well and am equally curious to hear more details from TruGenetics.
I once asked my law firm if we could issue stock shares to research participants, the laughed at me. I guess that is questionably legal. But imagine how many people would keep accurate records and participate, knowing that as the study succeeds, they stand to profit.....
Lots of confounding issues, but buy in would be certain.
We were going to call it GPM Health.
They just asked me to close my account. Is it already shutting down?
Looks like a delay due to a failure to secure funding (see Dan Vorhaus) - but I'll email them to find out.