Dna4Science: citizen-science data collection for ethical data re-use
Isolating 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-phenIsolating 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 attention to the measurement of other individual and environmental characteristics. Although this data is vital for scientific discovery, the largest datasets are now held by commercial direct-to-consumer (DTC) genetics companies, with increasingly limited access to scientists. Individual citizens, however, are ‘data owners’ and can freely download and donate their DTC genetic data, digital archives and fill in surveys to DNA4Science to take back control and ensure their data is used broadly by scientists. In return they receive transparency, control and reciprocity. The aim of DNA4Science is to develop a sustainable social business enterprise to ethically distribute donated data for use by certified scientists on a cost-recovery basis. Researchers will gain access to unique and novel data including aggregated digital phenotypes, ability to add customized questionnaire modules, cost-effective data collection and professional rapid dissemination. DNA4Science has the potential to lower costs of treatments and hasten their speed to market, democratizes data ownership with the rights of citizens first and lowers the costs of data collection.