Current Status and Future Challenges of Biobank Research in Malaysia

被引:4
作者
Amin, Latifah [1 ]
Olesen, Angelina [1 ]
Mahadi, Zurina [1 ]
Ibrahim, Maznah [1 ]
机构
[1] Univ Kebangsaan Malaysia, Pusat Citra Univ, Bangi, Selangor, Malaysia
关键词
Biobanks; Religious acceptance; Public trust; Healthcare policy; Governance; Informed consent; STAKEHOLDERS ATTITUDES; BROAD CONSENT; KEY ISSUES; ETHICS; COMMERCIALIZATION; GOVERNANCE; DONORS; PARTICIPATION; PERSPECTIVES; GENOTYPE;
D O I
10.1007/s41649-021-00171-5
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
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.
引用
收藏
页码:297 / 315
页数:19
相关论文
共 79 条
[1]  
Abdul, 2018, MALAYSIAN BIOBANKS I, V1, P2
[2]   Factors influencing public participation in biobanking [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal ;
Mustafa, Ebtihal .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2014, 22 (04) :445-451
[3]   Public support and consent preference for biomedical research and biobanking in Jordan [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2013, 21 (05) :567-570
[4]   Public Perception Towards Biobanking in Jordan [J].
Ahram, Mamoun ;
Othman, Areej ;
Shahrouri, Manal .
BIOPRESERVATION AND BIOBANKING, 2012, 10 (04) :361-365
[5]   Ethics of Research Biobanks: Islamic Perspectives [J].
Alahmad, Ghiath ;
Dierickx, Kris .
BIOPRESERVATION AND BIOBANKING, 2018, 16 (03) :171-178
[6]  
Amin L., 2007, ASIA-PAC J MOL BIOL, V15, P39
[7]   Determinants of the willingness to participate in biobanking among Malaysian stakeholders in the Klang Valley [J].
Amin, Latifah ;
Hashim, Hasrizul ;
Mahadi, Zurina ;
Ismail, Khaidzir .
BMC MEDICAL RESEARCH METHODOLOGY, 2018, 18
[8]   Factors influencing stakeholders' attitudes toward cross-kingdom gene transfer in rice [J].
Amin, Latifah ;
Azad, Md. Abul Kalam ;
Azlan, Noor Ayuni Ahmad ;
Zulkifli, Faizah .
NEW GENETICS AND SOCIETY, 2014, 33 (04) :370-399
[9]   Stakeholders' Attitude to Genetically Modified Foods and Medicine [J].
Amin, Latifah ;
Jahi, Jamaluddin Md ;
Nor, Abd Rahim Md .
SCIENTIFIC WORLD JOURNAL, 2013,
[10]   Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia? [J].
Aziz, Mohammad Firdaus Abdul ;
Yusof, Aimi Nadia Mohd .
ASIAN BIOETHICS REVIEW, 2019, 11 (02) :209-222