Citizen-science data collection for ethical data re-use
Linking genetic markers associated with phenotypes (i.e. diseases and behaviour) is one of the most promising frontiers of scientific discovery. Genetics plays a key role in understanding multiple diseases, holding a promise for medical interventions and drug targets. Attention to genotype measurement has resulted in a neglect of novel and precision phenotypes and novel measurement of other individual and environmental characteristics. Although combined genotype-phenotype data is vital for scientific discovery, the largest datasets are held by commercial direct-to-consumer (DTC) genetics companies and other types of social media and personal data from commercial companies, with access increasingly limited to scientists. Individual citizens, however, are ‘data owners’ and can freely download and donate their personal data and fill in surveys for this project. First called DNA4Science and later expanded during the Proof of Concept phase to Data2ThePeople, this citizen science project allows individuals to take back control of their own personal data and ensure it is ethically used by a broader range of scientists. Via an online platform, data donators receive transparency, control and reciprocity by being able to explore their own data on their own personal dashboard and see how their data is being used for research. The aim is to develop a sustainable social business enterprise to ethically distribute donated data for use by certified scientists on a cost-recovery basis on a secure Trusted Research Environment. In a secure, well-governed and GPDR compliant platform, researchers will gain access to donated data including standardized phenotypes, novel aggregated digital phenotypes, and ability to add customized modules, cost-effective data collection. This project frees personal data and empowers citizens with the potential to democratize data ownership, lower costs of data collection and the potential to lead to novel new discoveries in the realm of health and behavioural research.
