Desiderata for digital consent in genomic research
Desiderata for digital consent in genomic research
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DOI：
10.1007/s12687-017-0355-z
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发表时间：
2018-04-01
影响因子：
1.9
通讯作者：
Nunez-Benjumea, Francisco
中科院分区：
文献类型：
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作者：
Luis Parra-Calderon, Carlos;Kaye, Jane;Nunez-Benjumea, Francisco
在此，我们描述了数字同意（DC）系统的特征，以支持当前与基因组研究知情同意所带来的挑战相关的伦理-法律问题。一个潜在的解决方案，支持与患者的持续互动，并允许控制他们的数据和样本如何在基因组研究中使用，可以基于数字同意。但是还有其他需要解决的挑战，例如在分析基因组测试结果时的偶然发现（没有预料到）。本文讨论了精准医疗发展的安全和隐私建议，以及健康信息标准化组织（如HL7和IHE）的互操作性参考，以及基因组医学伦理领域的最新研究。通过这项工作，确定了需要进一步探索的十个关键特征，以支持基因组研究中DC的实现。
Herein, we describe the characterization of a Digital Consent (DC) System to support current ethical-legal issues associated with challenges posed by informed consent for genomic research. A potential solution to support ongoing interaction with patients and allow control over how their data and samples are being used in genomic research can be Digital Consent based. But there are other challenges that need to be addressed, such as incidental findings when analyzing the results of genomic tests (not expected). This paper addresses security and privacy recommendations for the development of precision medicine, and the interoperability references of Health Information Standardization Organizations such as HL7 and IHE, as well as recent research in the field of ethics in Genomic Medicine. As a result of this work, ten key features that need to be further explored have been identified in order to support the realization of DC in Genomic Research.