Stakeholders’ Attitudes towards Biobanks in Malaysia (Sikap Pihak Berkepentingan terhadap Biobank di 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.

Keywords: Attitude; biobank; religion; education; Malaysia.

ABSTRAK

Kelulusan MyCohort oleh kabinet pada tahun 2005 dilihat sebagai langkah penting negara untuk memiliki Biobanknya yang pertama dalam meningkatkan pencegahan, diagnosis dan rawatan penyakit. Kajian lampau menunjukkan sikap orang ramai terhadap biobank bergantung kepada beberapa faktor antaranya termasuklah penglibatan awam, kepercayaan kepada pemain  utama, privasi dan keselamatan data, manfaat yang dijangka, altruisma dan pembolehubah demografik tertentu. Objektif kajian ini adalah untuk menilai dan membandingkan tahap sikap pihak berkepentingan di Malaysia terhadap Biobank berdasarkan tahap pendidikan dan agama. Kajian telah dijalankan ke atas 509 responden dewasa di kawasan Lembah Klang, Malaysia. Hasil kajian mendapati sikap pihak berkepentingan terhadap Biobank boleh diklasifikasikan sebagai tinggi. Walaupun persepsi faedah dan penerimaan agama meraka adalah pada tahap yang tinggi, mereka turut menzahirkan tahap kebimbangan yang sederhana tinggi apabila merujuk kepada isu-isu perlindungan data dan spesimen. Hal ini mencadangkan pihak berkepentingan di Malaysia juga cenderung untuk menjadi kritikal apabila menyuarakan pandangan mereka terhadap sistem yang kompleks seperti Biobank. MANOVA satu hala pada mulanya telah mengesan perbezaan yang signifikan sikap terhadap Biobank berdasarkan kumpulan pihak berkepentingan, tahap pendidikan dan agama. Lanjutan analisis univariat dan analisis Post Hoc mengesahkan bahawa wujud perbezaan sikap secara signifikan merentasi kumpulan pihak berkepentingan, namun tiada perbezaan yang signifikan wujud berdasarkan tahap pendidikan dan agama. Hasil kajian ini boleh dijadikan penanda aras yang bermanfaat kepada para saintis dan badan kerajaan yang terlibat dalam pengawalan untuk memahami sikap masyarakat terhadap biobank sebelum ia dilaksanakan.

Kata kunci: Sikap; biobank; agama; pendidikan; Malaysia.