Category Archives: citizen science

Memory and empathy studies launch on crowdsourced health platform!

Two new health studies organized by DIYgenomics and collaborators have recently launched on the crowdsourcing platform Genomera. One is a memory study: Dopamine Genes and Rapid Reality Adaptation in Thinking and the other is an empathy study: Social Intelligence Genomics & Empathy-Building.

The Genomera platform boasts over 700 community members who are interested in participating in studies. While several of the approximately 30 listed studies investigate genetics as a related component of health, it is not necessary to have data from 23andMe or other consumer genomics services to join the health collaboration community and participate in studies. There are already 40 participants in the memory study and almost 20 in the empathy study.

The objective of the memory study is to see if genetic variants related to dopamine processing in the brain impact the processing of memories. The study is being conducted in conjunction with leading researchers at the Center of Cognitive Neurorehabilitation in Geneva Switzerland. The participation requirements are to complete an online Memory Filtering Task which takes approximately 40 minutes and a short Demographic Survey.

The objective of the empathy study is to confirm and extend research linking genetic profile and social intelligence, specifically whether individuals with certain genetic profiles may have a greater natural capacity for optimism and empathy, extraversion, and altruism. The participation requirement is to complete two short standardized online surveys for empathy quotient and other personality attributes. In addition, there is an optionally available Personal Virtual Coach app for empathy-building, a sort of SIRI 2.0 for mental performance optimization.

Scaling citizen health science and ethical review

(cross-posted at Broader Perspective)

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