Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI
- PMID: 39499856
- PMCID: PMC12005476
- DOI: 10.1080/15265161.2024.2416117
Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI
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.
Keywords: Informed consent; biomedical research; blockchain; generative AI; large language models (LLMs); research ethics.
Conflict of interest statement
CB is founder and CEO of AminoChain inc, a company providing blockchain-based decentralized biobanking products. SPM and JS are advisors of AminoChain, Inc. SPM is also an ethics advisor for Retroviral Therapeutics LLC. JS is a Partner Investigator on an Australian Research Council grant LP190100841 which involves industry partnership from Illumina. He does not personally receive any funds from Illumina. JS is a Bioethics Committee consultant for Bayer. No other authors report relevant disclosures.
Comment in
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Demonstrated Consent and the Common Good: On Withdrawal of Consent in Stem Cell Research.Am J Bioeth. 2025 Apr;25(4):139-141. doi: 10.1080/15265161.2025.2470679. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192674 No abstract available.
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Narrative Transparency in AI-Driven Consent.Am J Bioeth. 2025 Apr;25(4):136-138. doi: 10.1080/15265161.2025.2470675. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192675 No abstract available.
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In Search of Durable Models for Research Consent in Emerging Computing Environments.Am J Bioeth. 2025 Apr;25(4):132-135. doi: 10.1080/15265161.2025.2470672. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192678 No abstract available.
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Consent Is Dead, Long Live Ethical Oversight: Integrating Ethically Sourced Data into Demonstrated Consent Models.Am J Bioeth. 2025 Apr;25(4):112-115. doi: 10.1080/15265161.2025.2470657. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192687 No abstract available.
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Challenges to Demonstrated Consent in Biobanking: Technical, Ethical, and Regulatory Considerations.Am J Bioeth. 2025 Apr;25(4):124-127. doi: 10.1080/15265161.2025.2470655. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192688 No abstract available.
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Informed Consensus: The Future of Respect for Persons in Biomedical Research.Am J Bioeth. 2025 Apr;25(4):142-144. doi: 10.1080/15265161.2025.2470695. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192689 No abstract available.
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On the Complexities of Enabling Demonstrated Consent.Am J Bioeth. 2025 Apr;25(4):115-118. doi: 10.1080/15265161.2025.2470694. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192692 No abstract available.
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Selling Ethics.Am J Bioeth. 2025 Apr;25(4):127-129. doi: 10.1080/15265161.2025.2470690. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192694 No abstract available.
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Technologies Do Not Build Trust, People Do: A Critical Response to Promises of Trust in Biobanking Through Blockchain and Generative AI.Am J Bioeth. 2025 Apr;25(4):130-132. doi: 10.1080/15265161.2025.2470646. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192695 No abstract available.
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Consent, Legal Certainty and the Need for Governance.Am J Bioeth. 2025 Apr;25(4):118-120. doi: 10.1080/15265161.2025.2470683. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192706 No abstract available.
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Consent at the Ease of a Click? Technosolutionist Fixes Cannot Replace Human Relations and Solidarity.Am J Bioeth. 2025 Apr;25(4):121-123. doi: 10.1080/15265161.2025.2470681. Epub 2025 Apr 7. Am J Bioeth. 2025. PMID: 40192707 No abstract available.
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