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

Abstract

BackgroundThe demand in biobanking for the collection and maintenance of biological specimens and personal data from civilians to improve the prevention, diagnosis and treatment of diseases has increased notably. Despite the advancement, certain issues, specifically those related to privacy and data protection, have been critically discussed. The purposes of this study are to assess the willingness of stakeholders to participate in biobanking and to determine its predictors.MethodsA survey of 469 respondents from various stakeholder groups in the Klang Valley region of Malaysia was carried out. Based on previous research, a multi-dimensional instrument measuring willingness to participate in biobanking, and its predictors, was constructed and validated. A single step Structural Equation Modelling was performed to analyse the measurements and structural model using the International Business Machines Corporation Software Package for Social Sciences, Analysis of Moment Structures (IBM SPSS Amos) version 20 with a maximum likelihood function.ResultsMalaysian stakeholders in the Klang Valley were found to be cautious of biobanks. Although they perceived the biobanks as moderately beneficial (mean score of 4.65) and were moderately willing to participate in biobanking (mean score of 4.10), they professed moderate concern about data and specimen protection issues (mean score of 4.33). Willingness to participate in biobanking was predominantly determined by four direct predictors: specific application-linked perceptions of their benefits (β = 0.35, p < 0.001), issues of data and specimen protection (β = − 0.31, p < 0.001) and religious acceptance (β = 0.15, p < 0.05) and trust in key players (β = 0.20, p < 0.001). The stakeholders’ willingness to participate in biobanking also involves the intricate relationships between the above-mentioned factors and other predictors, such as attitudes regarding technology, religiosity and engagement.ConclusionsThe findings of this study reaffirmed that stakeholders’ willingness to participate in biobanking is a complex phenomenon that should be viewed from a multidimensional perspective. Stakeholder willingness to participate in biobanking is warranted when direct predictors (benefits, issues of data and specimen protection, religious acceptance, and trust in key players) as well as indirect factors are well accounted for.Electronic supplementary materialThe online version of this article (10.1186/s12874-018-0619-2) contains supplementary material, which is available to authorized users.

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

“…The complete mapping of the human genome has greatly expanded our ability to better understand the genetic basis of human disease and to improve management, thus ushering in new era of personalized medicine [ 1 , 2 ]. This development has led to the need for the establishment of biobanks which are able to collect and supply large amounts of samples and data required to conduct large genomic studies [ 3 ].…”

Current Status and Future Challenges of Biobank Research in Malaysia

“…Trust in the key players is the third direct predictor of participants' willingness to participate in biobank research (Amin et al 2018). This indicates that the more trust the public has in the key players, the more willing they are willing to participate in research related to biobanking, as they are inclined to rate biobank research as beneficial.…”

“…Malaysian stakeholders in general moderately believed that the application of biobanking is accepted by their religion and customs ). However, when they think that biobanks pose some risks then they think that it will be less religiously acceptable (Amin et al 2018). This shows that those who are more religiously inclined tend to be more critical of biobanking, and religious view is clearly observed by them when making decisions related to biobanking.…”

“…Based on previous research regarding public attitude towards biobanks, it is clear that a large proportion of the public do not have a problem supporting the purpose of having biobanks storing human biological materials (Domaradzki and Pawlikowski 2019;Simon et al 2011;Lewis et al 2013). However, their supports are very much dependent on their knowledge and awareness regarding biobanks (Porteri et al 2014); their trust in the stakeholders involved in collecting, managing, and monitoring biobank activities (Burgess 2014;Gottweis and Lauss 2012); the risks and benefits associated with biobanking (Tomlinson 2013;Pullman et al 2012;; and their religious and moral acceptance of biobanks (Amin et al 2018;Ahram et al 2014;Eisenhauer and Arslanian-Engoren 2016;Alahmad and Dierickx 2018). These factors also relate to their willingness to donate or participate in biobank activities (Amin et al 2018;Domaradzki and Pawlikowski 2019).…”

“…However, their supports are very much dependent on their knowledge and awareness regarding biobanks (Porteri et al 2014); their trust in the stakeholders involved in collecting, managing, and monitoring biobank activities (Burgess 2014;Gottweis and Lauss 2012); the risks and benefits associated with biobanking (Tomlinson 2013;Pullman et al 2012;; and their religious and moral acceptance of biobanks (Amin et al 2018;Ahram et al 2014;Eisenhauer and Arslanian-Engoren 2016;Alahmad and Dierickx 2018). These factors also relate to their willingness to donate or participate in biobank activities (Amin et al 2018;Domaradzki and Pawlikowski 2019). Malaysia currently has both private-and government-owned biobanks.…”