Amin Latifah, Olesen Angelina, Mahadi Zurina, Ibrahim Maznah
Pusat Citra Universiti, Universiti Kebangsaan Malaysia, Bangi, Selangor Malaysia.
Asian Bioeth Rev. 2021 Mar 31;13(3):297-315. doi: 10.1007/s41649-021-00171-5. eCollection 2021 Sep.
The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers such as the governance of the national biobank as well as other privately owned biobanks in the nation, the public perspectives and perceptions regarding biobanks, and other matters such as the ethical, legal, and social issues related to biobank research. This article will highlight the status and issues related to biobank research in Malaysia and provide suggestions on future research practices that we feel need to be seriously considered. These suggestions are designed to advance and enlighten researchers' knowledge, as well as provide the public with information on issues associated to biobanking. Good governance increases public knowledge and trust, and religious acceptance of biobank research and accountability can lead to increased participation in biobank research. The direct implications of the discussion about the ethical, legal, and social issues of biobanks are pertinent for the foundation of knowledge relating to biobanks, as well as the forward gestures for future medicine for mankind.
2005年建立的“我的队列研究”表明，马来西亚政府对在该国创建生物样本库的兴趣与日俱增。该项目可被视为马来西亚规模最大、最全面的队列研究，存储了数十万份人类样本用于流行病学和生物医学研究。然而，对于马来西亚生物样本库研究的当前问题或现状，人们知之甚少。存在一些亟待解答的紧迫问题，比如国家生物样本库以及国内其他私人拥有的生物样本库的管理、公众对生物样本库的看法和认知，以及与生物样本库研究相关的伦理、法律和社会问题等。本文将重点介绍马来西亚生物样本库研究的现状和问题，并就我们认为需要认真考虑的未来研究实践提出建议。这些建议旨在增进和启发研究人员的知识，同时向公众提供与生物样本库相关问题的信息。良好的管理能增加公众的知识和信任，宗教对生物样本库研究的接受以及问责制可促使更多人参与生物样本库研究。关于生物样本库伦理、法律和社会问题的讨论的直接影响，对于生物样本库相关知识的基础以及人类未来医学的发展方向都具有重要意义。
