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引用次数: 0
摘要
亨丽埃塔-拉克斯(Henrietta Lacks)的身份已被确认的组织变成了 HeLa 细胞(学习健康平台的典范)。在这篇文章中,我们讨论了将对拉克斯女士组织的研究与促进对她作为病人的尊重、惠益和公正的义务分离开来的问题。这一案例揭示了生物样本二次利用所面临的伦理挑战,这些挑战在当代学习型医疗体系中依然存在。去标识化和广泛同意旨在通过最大限度地减少患者负担来最大限度地提高护理学习的效益,但这些策略对于隐私、透明度和参与度来说是不够的。因此,由此产生的人体细胞和组织产品供应链可能会重现拉克斯一家所经历的伤害。我们介绍了区块链技术在学习型医疗系统架构中建立前所未有的透明度、参与度和问责制的潜力,而不需要去身份化。不可篡改的代币能够保持固有的独特数字资产的出处,这可能会优化为研究提供组织和其他临床数据的患者的效用、价值和尊重。我们考虑了潜在的益处,并调查了成功实施拟议解决方案所面临的主要技术、伦理、社会经济和法律挑战。我们需要进一步探索不可兑换代币在促进学习型医疗系统的效率、有效性和公正性方面的潜力。
Nonfungible Tokens as a Blockchain Solution to Ethical Challenges for the Secondary Use of Biospecimens: Viewpoint.
Henrietta Lacks' deidentified tissue became HeLa cells (the paradigmatic learning health platform). In this article, we discuss separating research on Ms Lacks' tissue from obligations to promote respect, beneficence, and justice for her as a patient. This case illuminates ethical challenges for the secondary use of biospecimens, which persist in contemporary learning health systems. Deidentification and broad consent seek to maximize the benefits of learning from care by minimizing burdens on patients, but these strategies are insufficient for privacy, transparency, and engagement. The resulting supply chain for human cellular and tissue-based products may therefore recapitulate the harms experienced by the Lacks family. We introduce the potential for blockchain technology to build unprecedented transparency, engagement, and accountability into learning health system architecture without requiring deidentification. The ability of nonfungible tokens to maintain the provenance of inherently unique digital assets may optimize utility, value, and respect for patients who contribute tissue and other clinical data for research. We consider the potential benefits and survey major technical, ethical, socioeconomic, and legal challenges for the successful implementation of the proposed solutions. The potential for nonfungible tokens to promote efficiency, effectiveness, and justice in learning health systems demands further exploration.