A lot has been written about the opportunities of the Internet for medicine, and lately, also for disease research specifically. Although it remains to be seen how significant and sustainable a change this will result in, some recent developments are highly relevant for the area of genetic research. User-friendly, low-threshold web-based tools do not only provide information to patients and other users, but they also supply user-generated data that can be utilized by both medical practice and medical research. Many of these developments have been below the radar of mainstream academic research so far. Issues related to data quality and standardization, as well as data protection and privacy, still need to be addressed. Dismissing these platforms as fads of a tiny privileged minority risks missing the opportunity to have our say in these debates.