Ethische Aspekte von Blockchain-Technologien in der biomedizinischen Forschung

Abstract

Abstract Definition of the problem Biomedical research based on big data offers immense benefits. Large multisite research that integrates large amounts of personal health data, especially genomic and genetic data, might contribute to a more personalized medicine. This type of research requires the transfer and storage of highly sensitive data, which raises the question of how to protect data subjects against data harm, such as privacy breach, disempowerment, disenfranchisement, and exploitation. As a result, there is a trade-off between reaping the benefits of big-data-based biomedical research and protecting data subjects’ right to informational privacy. Arguments Blockchain technologies are often discussed as a technical fix for the abovementioned trade-off due to their specific features, namely data provenance, decentralization, immutability, and access and governance system. However, implementing blockchain technologies in biomedical research also raises questions regarding consent, legal frameworks, and workflow integration. Hence, accompanying measures, which I call enablers, are necessary to unleash the potential of blockchain technologies. These enablers are innovative models of consent, data ownership models, and regulatory models. Conclusion Blockchain technologies as a technical fix alone is insufficient to resolve the aforementioned trade-off. Combining this technical fix with the enablers outlined above might be the best way to perform biomedical research based on big data and at the same time protect the informational privacy of data subjects.