Pusat Citra Universiti, Universiti Kebangsaan Malaysia, 43600 UKM Bangi, Selangor, Malaysia.
Policy and Strategic Planning Division, Ministry of Energy, Science, Technology, Environment & Climate Change, 62662, Putrajaya, Malaysia.
BMC Med Res Methodol. 2018 Dec 5;18(1):163. doi: 10.1186/s12874-018-0619-2.
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 < 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.
The 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.
生物银行收集和保存平民生物样本和个人数据以提高疾病预防、诊断和治疗水平的需求显著增加。尽管取得了进展，但仍有一些问题，特别是与隐私和数据保护相关的问题，受到了严格的讨论。本研究旨在评估利益相关者参与生物银行的意愿，并确定其预测因素。
对马来西亚巴生谷地区的 469 名来自不同利益相关者群体的受访者进行了调查。基于以往的研究，构建并验证了一种多维仪器，用于测量参与生物银行的意愿及其预测因素。使用国际商业机器公司的软件包进行社会科学分析，分析结构模型（IBM SPSS Amos）版本 20 进行单步结构方程建模，采用最大似然函数。
巴生谷地区的马来西亚利益相关者对生物库持谨慎态度。尽管他们认为生物库具有中等益处（平均得分为 4.65），并且愿意参与生物库（平均得分为 4.10），但他们对数据和样本保护问题表示中等关注（平均得分为 4.33）。参与生物银行的意愿主要由四个直接预测因素决定：与特定应用相关的利益感知（β=0.35，p<0.001）、数据和样本保护问题（β=-0.31，p<0.001）、宗教接受度（β=0.15，p<0.05）和对关键参与者的信任（β=0.20，p<0.001）。利益相关者参与生物银行的意愿还涉及上述因素与其他预测因素（如对技术、宗教信仰和参与的态度）之间的复杂关系。
本研究结果再次证实，利益相关者参与生物银行的意愿是一个复杂的现象，应该从多维的角度来看待。当直接预测因素（利益、数据和样本保护问题、宗教接受度以及对关键参与者的信任）以及间接因素得到充分考虑时，利益相关者参与生物银行是合理的。
