A multidisciplinary team of academics with expertise in ethics, computer and social sciences at the University of Malta, have recently published a paper in the European Journal of Human Genetics (a Springer Nature publication) on the use of blockchain technology for dynamic consent.
Dynamic consent allows participants in biomedical research to update or withdraw their consent throughout the lifetime of a study.
The paper, titled “Dwarna: A blockchain solution for dynamic consent”, gives an account of an interactive web portal called Dwarna, which facilitates recruitment and participation of the general public in scientific research studies. One of the authors, Dr J.P. Ebejer, described how “the paper offers an innovative adaptation of blockchain technology to enhance ethicality of biobank-based research, by offering an immutable audit of the participants’ consent trail stored on the blockchain. The seemingly incompatible issues of the blockchain’s immutability and the GDPR’s ‘right-to-be-forgotten’ are addressed in the article”.
Another author of the study, Dr Gillian Martin, explained that “Dwarna is the result of exciting multidisciplinary research. Our team is a synergistic collaboration of expertise from IT, social sciences, research ethics and biomedical science. We set out to create a virtual space which would bring bio-medical researchers, the general public and research participants together.
The key aim was to in-crease awareness and understanding of biobank-based research, to make the governance processes transparent, and to empower the participants to have more control over issues related to informed consent. This cutting-edge use of blockchain for providing a version of 'dynamic consent' enables our Dwarna portal to do this in a way that enhances transparency and trustworthiness - both essen-tial elements in enhancing ethicality of genomic research”.