Privacy advocates have spent the better part of a decade teaching people that their data is precious and that once it’s online, it’s online forever. As this message finally takes hold, and users have finally started to limit the data they share online, Big Data initiatives are asking users to freely give up their data with no direct or immediate benefit. Without transparency of Big Data practices, users may continue reducing the data they share, especially health data, because they don’t understand the collective value of their data. It is in this environment that the review boards of today and tomorrow must operate.
Traditionally, internationally accepted frameworks have guided decision makers and health professionals to decide what they should and should not do when dealing with health data. This was necessary because health data has customarily warranted special protections. However, in the era of rapid technology advancement, previously accepted frameworks are no longer sufficient for three reasons. First, innovation is outpacing the frameworks themselves, many of which reflect the world of data collection decades ago. Second, health data is increasingly being collected outside of traditional healthcare settings. Third, data are then shared with third parties not only for research, but also for commercial gain.