Editor’s Note:
The following Barnes et al. article “ Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI” has been previously shared in this digest. We are sharing it again as this target article in the American Journal of Bioethics has resulted in a number of peer commentaries which follow below. These commentaries offer a range of perspectives on biobanking, blockchain and generative AI and consent. These are areas which we continue to examine in our work.
Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI
Caspar Barnes, Mateo Riobo Aboy, Timo Minssen, Jemima Winifred Allen, Brian D. Earp, Julian Savulescu
The American Journal of Bioethics, 5 November 2024
Abstract
Participation in research is supposed to be voluntary and informed. Yet it is difficult to ensure people are adequately informed about the potential uses of their biological materials when they donate samples for future research. We propose a novel consent framework which we call “demonstrated consent” that leverages blockchain technology and generative AI to address this problem. In a demonstrated consent model, each donated sample is associated with a unique non-fungible token (NFT) on a blockchain, which records in its metadata information about the planned and past uses of the sample in research, and is updated with each use of the sample. This information is accessible to a large language model (LLM) customized to present this information in an understandable and interactive manner. Thus, our model uses blockchain and generative AI technologies to track, make available, and explain information regarding planned and past uses of donated samples.
Center for Informed Consent Integrity 