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基因组学研究人员的道德责任:为什么个性化医学需要集体方法。

Moral Duties of Genomics Researchers: Why Personalized Medicine Requires a Collective Approach.

机构信息

Department of Pathology, University Medical Center Utrecht, Utrecht, The Netherlands.

Department of Medical Humanities, University Medical Center Utrecht, Utrecht, The Netherlands.

出版信息

Trends Genet. 2017 Feb;33(2):118-128. doi: 10.1016/j.tig.2016.11.006. Epub 2016 Dec 22.

Abstract

Advances in genome sequencing together with the introduction of personalized medicine offer promising new avenues for research and precision treatment, particularly in the field of oncology. At the same time, the convergence of genomics, bioinformatics, and the collection of human tissues and patient data creates novel moral duties for researchers. After all, unprecedented amounts of potentially sensitive information are being generated. Over time, traditional research ethics principles aimed at protecting individual participants have become supplemented with social obligations related to the interests of society and the research enterprise at large, illustrating that genomic medicine is also a social endeavor. In this review we provide a comprehensive assembly of moral duties that have been attributed to genomics researchers and offer suggestions for responsible advancement of personalized genomic cancer care.

摘要

基因组测序技术的进步,加上个性化医疗的引入,为研究和精准治疗,特别是肿瘤学领域,提供了有前景的新途径。与此同时,基因组学、生物信息学以及人体组织和患者数据的收集,为研究人员带来了新的道德责任。毕竟,大量潜在敏感信息正在被生成。随着时间的推移,旨在保护个体参与者的传统研究伦理原则已经补充了与社会利益和整个研究事业相关的社会义务,这表明基因组医学也是一项社会事业。在这篇综述中,我们提供了一个综合的基因组学研究人员应承担的道德责任清单,并为负责任地推进个性化癌症基因组学护理提出了建议。

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