Stakeholders’ Attitudes towards Biobanks in Malaysia

Abstract

The Malaysian Cabinet's approval of MyCohort in 2005 was seen as the crucial step toward the country having its very first biobank to improve the prevention, diagnosis and treatment of diseases. Past studies have shown that public attitudes towards biobanking depend heavily upon several factors including public engagement with biobanks, trust in key actors, privacy and data security, perceived benefit, altruism and certain demographic variables. The objective of this paper is to assess and compare the attitude levels of the Malaysian stakeholders' towards the application of biobanks across education levels and religion. A survey was carried out on 509 adult respondents in the Klang Valley region of Malaysia. Results of the study have substantiated that the Malaysian stakeholders' attitudes towards biobank were classified as high. Despite their high levels of perceived benefit and religious acceptance, they also expressed moderately high levels of concern when it comes to issues of data and specimen protection; this suggests that the Malaysian stakeholders also tend to be critical upon expressing their views towards a complex system such as biobanks. One-way MANOVA initially has detected a significant difference of attitude towards biobanks across stakeholder groups, education level and religion. Series of univariate analysis following the MANOVA, as well as Post Hoc analysis, also confirm significant difference of attitude existing across stakeholders; however, no significant differences were detected across education level and religion. The research finding serves as a useful benchmark for scientists and government regulators to understand public attitudes to biobanks before they are set into use.

Stakeholders’ Intention to Adopt Gene Therapy in Malaysia: Effects of Age, Education, and Religion

“…This finding is comparable with those of previous studies which reported that an inverse relationship exists between the perceived benefits and the perceived risks (Amin et al, 2017(Amin et al, , 2018Frewer, 2017). Hashim et al (2017) demonstrated that the intention to adopt was primarily influenced by the perceived benefits and by religious acceptance. Frewer (2017) also reported that risk and benefit perception are the key element with regard to successful new technology and product acceptance.…”

“…This finding is in line with a study conducted by Delhove et al (2020), in which respondents with better (selfreported) knowledge were shown to have more support for both gene therapy and gene editing technologies. Moreover, several studies have also reported that the higher the education of the respondent, the more beneficial they view the technology as being, and the more supportive they are toward the application (Amin et al, 2016;Hashim et al, 2017;Wang et al, 2017). This could be due to the fact that they were actively seeking information, thus shaping a more positive view toward the application.…”

“…It explored the respondents' characteristics, specific attitudes, and behavioral intention toward gene therapy technology. The specific attitude variables were perceived benefits, perceived risks (Amin et al, 2013(Amin et al, , 2017(Amin et al, , 2018Gaskell et al, 2010), religious acceptance (Hashim et al, 2017;Kelley, 1995), and behavioral intention (Pin, 2009). The questionnaires were presented in Malay and English.…”

Determinants of the willingness to participate in biobanking among Malaysian stakeholders in the Klang Valley

“…Bin Abdul Aziz and colleagues [ 5 , 28 ] have raised possible ethical and legal issues that may shape public trust (e.g., issues of data privacy and mishandling) in Malaysia. Hashim and colleagues [ 29 ] highlighted that although the majority of stakeholders in Malaysia view biobanking positively, they were also concerned about its possible risks, religious acceptance, and ownership and potential misuse issues. As described above, Malaysia is following global trends in establishing biobanks.…”

“…As described above, Malaysia is following global trends in establishing biobanks. To reap the benefits of such technology, Hashim et al [ 29 ] recommended a further analysis of the causal factors of concerns related to biobanks. Once identified, these factors can help researchers and related governmental bodies devise appropriate educational and intervention programmes to enhance public awareness and to promote this promising technology.…”