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

The 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 protectio...

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Bibliographic Details
Published in:BMC medical research methodology 2018-12, Vol.18 (1), p.163-163, Article 163
Main Authors: Amin, Latifah, Hashim, Hasrizul, Mahadi, Zurina, Ismail, Khaidzir
Format: Article
Language:English
Subjects:
Attitudes
Biobank
Civilians
Data analysis
Data security
Determinants
Family medical history
Gene banks
Genomics
Germplasm resources
Instruments (Equipment)
Klang Valley
Management
Medical cooperation
Office equipment
Perceived benefits
Perceptions
Personal information
Privacy
Religion
Religious acceptance
Retirement benefits
Social aspects
Social science research
Software
Stakeholders
Technology
Therapeutics
Willingness to participate
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Summary:The 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. A 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. Malaysian 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 
ISSN:1471-2288
1471-2288
DOI:10.1186/s12874-018-0619-2