Scaling citizen health science and ethical review

Many things are needed to scale citizen science from small cohorts on the order of a few individuals to medium and large-sized cohorts. Building trust in online health communities, motivating sustained engagement from study participants, and lower-cost easier-access blood tests are a few things that are needed.

Legal and ethical issues are also a challenge. Independent ethical review is appropriate but the current IRB (Institutional Review Board) requirement for funding and journal publication is a barrier to crowdsourced study growth. In 23andMe's early studies, there was a definitional debate as to whether their research constituted 'human subjects research,' and whether there was a difference in interacting with subjects in-person versus over the internet.

The U.S. HHS (Health and Human Services) definition of 'humans subjects research' is research that "obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information." (45 CFR 46.102(f)) The strict reading is that any research obtained by 'interacting' with a human subject (e.g.; likely all personalized health collaboration community research) would require an IRB for the funding needed to do it at scale.

Acknowledgement: Thank you to Thomas Pickard for providing background research

Towards an epistemology of citizen science

Now that citizen science in the health domain is becoming more established, it is relevant to scale it up to tackle larger projects. Several things can be done such as the definition and introduction of liability and oversight models that would be the analogue of the traditional IRB (institutional review board), and the professionalization of participant roles in the study ecosystem such as that of the study manager.

A more subtle issue is to develop an epistemology of citizen science. This would provide a structure and context for exploring the knowledge that is derived from citizen science. One question is whether new kinds of knowledge are being formed through group collaborations such as wikipedia and health social networks. Another question is characterizing the differences (if any) in the types of knowledge generated by traditional medicine, self-experimentation, and health collaboration communities.