Last week The Wall Street Journal reported on a new project from Google.org – the Baseline Study (H/T ScienceInsider). Starting with a pilot group of 175, the study would collect anonymous genetic and molecular information (according to the article) to construct a more comprehensive data-based model of what a human is. Such a picture would ideally help researchers better identify symptoms and causes of various diseases. A desired outcome would be the ability to find markers of various diseases much earlier in people than is currently possible.
Of course, such a long-term study is not new. What would be different here is the potential scope of the project, should it expand beyond the initial population of 175. The project is lead by Dr. Andrew Cohen, a molecular biologist whose previous major achievement has been in high-volume HIV tests of blood plasma. Working in volume is something he’s comfortable with. The project is mindful of the need to preserve anonymity, and has stated information will be used strictly for health and medical purposes and not shared with insurance companies. Institutional review boards will be involved with the study, and once it grows beyond the initial group of 175, boards at the medical schools at Duke and Stanford Universities will be involved in controlling access and use of the information.
For reasons that escape me, I can find little mention of the project on the Google.org website. Even the mentions found on Google + don’t connect to the organization. It would seem to me that the Wall Street Journal article, and the subsequent press on it, could be part of an effort to gauge public interest and concerns with the project. The lack of details (the articles have little more to go on than the information provided to The Wall Street Journal) are frustrating.
And then there’s 23andMe. While not a Google project, the company invested a few million into 23andMe, and one of the co-founders (and current CEO) was married to one of the co-founders of Google. 23andMe had some trouble with the Food and Drug Administration over how it marketed its services. Yes, 23andMe is a private company, while Google.org is the ‘ideas lab’ part of Google and not necessarily connected to a profit motive. But it is hard to think that the amount of data collected by the Baseline Study would not be of interest to the company, whose business model relies heavily on collecting data, using it and providing it to others. I’ll be very interested in seeing how effective any data access and data use controls would be for this study. In short, how will the challenges of 23andMe influence the Baseline Study?