A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research

IF 1.3 Q3 ETHICS

Asian Bioethics Review Pub Date : 2022-11-08 DOI:10.1007/s41649-022-00229-y

Amnah Azahar, Aimi Nadia Mohd Yusof, Zahir Izuan Azhar

{"title":"A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research","authors":"Amnah Azahar, Aimi Nadia Mohd Yusof, Zahir Izuan Azhar","doi":"10.1007/s41649-022-00229-y","DOIUrl":null,"url":null,"abstract":"<div><h2>Abstract\n</h2><div><p>Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.</p></div></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2022-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00229-y.pdf","citationCount":"2","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Asian Bioethics Review","FirstCategoryId":"1085","ListUrlMain":"https://link.springer.com/article/10.1007/s41649-022-00229-y","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"ETHICS","Score":null,"Total":0}

引用次数: 2

Abstract

Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.

查看原文本刊更多论文

马来西亚生物银行研究中的知情同意方法和伦理挑战初探

摘要自2005年以来，马来西亚建立了几个生物库，以跟上英国和美国等其他国家生物医学研究和生物库开发的进展。尽管马来西亚建立了多个生物库，但人们对生物库研究中的知情同意方法及其伦理挑战知之甚少。本研究旨在确定马来西亚生物库研究中获得知情同意的方法，并探讨其伦理挑战。采用非概率目的性抽样，在巴生谷对关键线人进行了深入访谈。根据访谈，广泛同意是马来西亚生物库研究中获得知情同意的主要方法，并确定了五个主要的伦理挑战。这些挑战包括举报人对当前知情同意方法的意见、了解参与者的权利、研究伦理委员会的作用、马来西亚的生物银行治理以及举报人的知识和意识。总之，参与生物银行研究的人员对马来西亚研究生物银行的伦理、法律和社会方面缺乏了解。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Asian Bioethics Review Multiple-

CiteScore

6.20

自引率

3.40%

发文量

期刊介绍： Asian Bioethics Review (ABR) is an international academic journal, based in Asia, providing a forum to express and exchange original ideas on all aspects of bioethics, especially those relevant to the region. Published quarterly, the journal seeks to promote collaborative research among scholars in Asia or with an interest in Asia, as well as multi-cultural and multi-disciplinary bioethical studies more generally. It will appeal to all working on bioethical issues in biomedicine, healthcare, caregiving and patient support, genetics, law and governance, health systems and policy, science studies and research. ABR provides analyses, perspectives and insights into new approaches in bioethics, recent changes in biomedical law and policy, developments in capacity building and professional training, and voices or essays from a student’s perspective. The journal includes articles, research studies, target articles, case evaluations and commentaries. It also publishes book reviews and correspondence to the editor. ABR welcomes original papers from all countries, particularly those that relate to Asia. ABR is the flagship publication of the Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore. The Centre for Biomedical Ethics is a collaborating centre on bioethics of the World Health Organization.