Dynamic informed consent system, citizen science data management, quality control and integration

What is it about?

Background/Objectives: Dynamic informed consent is used to ensure that an individual participating in biobank can modify his decision about the research that is conducted with his sample and data and actively follow research results that could be of importance to him or his immediate relatives. Our aim is to develop a dynamic consenting and survey system prototype to integrate academic research conducted in Latvian Genome Database with citizen science initiatives maintaining data credibility via hierarchical metadata harmonization and assessing ELSA aspects. Methods: Working groups of experts in fields of ethics, data science, biobanking and interested stakeholders from patients’ organizations and the pharma industry are involved in the following tasks: (1) create “information-wise” data management algorithms for dynamic informed consent and survey system; (2) develop ELSA guidelines for implementation of “ethics by design” in the ICT system; (3) create an IT system prototype for biobank activities and citizen science initiative integration. Results: The prototype IT design have been created that consist of registration, consent, survey, result reporting and quality control models employing different access levels of several user types – biobank donors, citizen science enthusiasts, doctors/nurses and researchers. The “ethics by design” guidelines have been generated to ensure the best ELSA compliance of ICT system prototype. Conclusion: Integrative approach is to develop a user-centred ICT system for biobank and citizen science data integration that will enhance data utilization in various health-related areas and serve as basis for communication with participants of Latvian Genome Database. References:. Grants: Research was supported by the European Regional Development (Project no. 1.1.1.1/20/A/047).

Featured Image

Perspectives