A speaker at April’s annual AAHRPP conference (yes, the same AAHRPP that accredits us) mentioned that, whether we know it or not, we are all research subjects. Every time we swipe a store’s loyalty card to get a discount, we create analyzable data. Ditto for using electronic activity and health trackers like FitBits, MapMyWalk, or LoseIt. All of the information those devices and apps tracks doesn’t just disappear. It can be stored and analyzed later. Even your internet search engine searches are fair game.
Some examples are the Facebook study that got a lot of media coverage when it came to light, and the types of things companies can find out about individuals by analyzing people’s interactions with the company. And in the realm of medical research, Microsoft scientists used search engine data to identify internet users who may have pancreatic cancer, even before those people have been diagnosed. Researchers have also been able to identify patterns related to adverse drug reactions in web search logs, including prescription drug side effects not yet reported to the FDA.
So what does this mean to us on the IRB? Most of these type of projects falls outside the purview of IRB oversight. They’re not federally funded, they’re not always done at institutions that require even their not-federally-funded projects to undergo review, and studies involving data that are not individual identifiable wouldn’t even meet our definition of research involving human subjects. But they do raise questions of ethics, and privacy in a wired world. Do people understand that those low prices at the grocery store come at the cost of giving up information the store (or perhaps some other third party) can later use for its own purposes? Do internet service providers have any obligation, or incentive, to create a product that lets people who use certain search terms know that hey, they might want to check with a doctor?
As always, if you have trouble accessing the material at the links above, please contact Edith Paal in the IRB office for assistance.