Informed consent approach in Malaysian Biobanking for research purposes and its ethical challenges / Amnah Azahar

• Main Author: Azahar, Amnah
• Format: Thesis
• Language: English
• Published: 2020
• Subjects: Data processing. Bioinformatics; Genetics; Medical education. Medical schools. Research
• Online Access: https://ir.uitm.edu.my/id/eprint/63930/1/63930.pdf; https://ir.uitm.edu.my/id/eprint/63930/

In biobanking, valid informed consent is crucial to protect participants’ autonomy in relation to the use of their biological samples and their associated data for future research. However, traditional model of informed consent may not be adequate for this purpose as future research is yet to be determined. Consequently, few types of modified informed consent models (broad, dynamic and meta consent) have been proposed by bioethics scholars to address this issue. Capturing the differences between these types would give a better understanding in recommending which type of the consent model provides better autonomy protection in the future. Despite several biobanks already established in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the informed consent approach in the Malaysian biobanking and its ethical challenges. This study also aims to explore the differences in the modified informed consent models in protecting participants’ autonomy and propose a better approach. In depth interview with the informants found that broad consent is mainly used for research purposes and comes with five major ethical challenges. Using systematic review method this study addressed five significant differences in the consent models discussed and propose that dynamic consent has a better approach. Although dynamic consent would have a better approach, its implementation in the Malaysian context may have its own challenges This study found that there is lack of understanding among the researchers on the ethical, legal and social aspect of biobanking in Malaysia.