Ethical use of Public-Generated Data in Building Health Interventions
The use of web-based apps and platforms that generate individual data have become ubiquitous. Social media platforms (Facebook, Twitter, Instagram, etc.) have more than 4 billion users worldwide, and wearable devices (Apple Watch, FitBit, etc.) are used by millions. Further, research has demonstrated that Americans with chronic diseases often turn to online peer support groups that exist on social media platforms. The current pervasiveness of social, web, and mobile application (app) use in people's lives has led to mass amounts of unorganized, user-generated data that are continually and organically updated by the public, and are often available for mining. The existence of these data presents opportunities for life science researchers, and raises questions about how these data can be ethically used to improve the lives of those who have generated them. There is thus a pressing need to discuss the ethical issues surrounding uses of these types of data, which will continue to increase as the world becomes increasingly digital.