基因组数据研究中的伦理考虑。

IF 1.5 Q2 ETHICS
Rachel Horton, Anneke Lucassen
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引用次数: 3

摘要

目前,我们生成基因组数据的能力远远超过了我们理解它们含义的能力,这就提出了如何最好地利用它们的挑战。本文考虑伦理方面的工作与这些数据,集中在研究背景与临床护理交织在一起。我们讨论了基因组数据的识别性质,它们内在的医学信息,以及它们在生物家庭中的联系。我们继续考虑这对同意的意义,深思熟虑的基因组数据共享的重要性,构建有意义的发现的挑战,以及基因组数据集中不平等代表性的遗留问题。我们认为,基因组数据研究的持续成功依赖于公众对企业的信任:为了证明这种信任是合理的,我们需要确保强有力的管理,以及对此类实践中固有的道德问题的广泛参与。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Ethical Considerations in Research with Genomic Data.

Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.

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来源期刊
CiteScore
2.30
自引率
16.70%
发文量
45
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