GeneConsent gives genetic research participants complete control over their data by providing a dynamic informed consent service. This means that the individual does not give permission once for the use of all data, but gives permission for fractions of the data, and specific (research) actions. This gives the researcher precise (and sole) permission to access the required data. In addition to greater control for the individual, this model gives the researcher more certainty that he/she is acting within the framework of the law. This becomes important in a European context because of the GDPR and Data Governance Act.
Dynamic Informed Consent
GeneConsent is a technical solution for coordinating permission to use genetic data, between individuals and researchers. In concrete terms, this means that researchers must submit a request for each study with genetic data to the consent holder of that data (the individual), for which GeneConsent provides the platform. The individual can consent or deny any request. Here, it is crucial that the individual is well-informed, and at the same time is not overwhelmed with information. After consent, the individual is informed about the actions performed with their genetic data. In addition, the individual can always withdraw their consent, resulting in the researcher losing all access to the data.With the concept and prototype GeneConsent, the BioCommons team successfully completed the first phase of the Ledger project.
In this project, the development of distributed ledger technology is stimulated to power applications that serve the public interest. The core of this technology, best known from cryptocurrencies, is that a shared truth is created (the ledger, a kind of list of immutable data) that is decentrally maintained (i.e. by a large number of separate internet users). In addition to keeping track of transactions without the intervention of banks, this model offers possibilities for - for example - decentralized authentication and the secure sharing of data. The Ledger project also promotes design principles such as openness, data sovereignty and privacy-by-design.