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马来西亚开展和审查人类基因组学研究的伦理挑战:一项探索性研究。

Ethical challenges of conducting and reviewing human genomics research in Malaysia: An exploratory study.

作者信息

Zee Teong Win, Abdul Aziz Mohammad Firdaus Bin, Wei Phan Chia

出版信息

Dev World Bioeth. 2024 Dec;24(4):331-341. doi: 10.1111/dewb.12435. Epub 2023 Nov 23.

Abstract

Even though there is a significant amount of scholarly work examining the ethical issues surrounding human genomics research, little is known about its footing in Malaysia. This study aims to explore the experience of local researchers and research ethics committee (REC) members in developing it in Malaysia. In-depth interviews were conducted from April to May 2021, and the data were thematically analysed. In advancing this technology, both genomics researchers and REC members have concerns over how this research is being developed in the country especially the absence of a clear ethical and regulatory framework at the national level as a guidance. However, this study argues that it is not a salient issue as there are international guidelines in existence and both researchers and RECs will benefit from a training on the guidelines to ensure genomics research can be developed in an ethical manner.

摘要

尽管有大量学术著作探讨了围绕人类基因组学研究的伦理问题,但对于其在马来西亚的基础情况却知之甚少。本研究旨在探讨当地研究人员和研究伦理委员会(REC)成员在马来西亚发展该领域的经验。2021年4月至5月进行了深入访谈,并对数据进行了主题分析。在推进这项技术的过程中,基因组学研究人员和研究伦理委员会成员都对该国如何开展这项研究感到担忧,特别是国家层面缺乏明确的伦理和监管框架作为指导。然而,本研究认为这并非一个突出问题,因为已有国际准则,研究人员和研究伦理委员会都将受益于关于这些准则的培训,以确保基因组学研究能够以符合伦理的方式开展。

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