A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research

Azahar, Amnah; Yusof, Aimi Nadia Mohd; Azhar, Zahir Izuan

doi:10.1007/s41649-022-00229-y

Cited by 2 publications

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“…Consequently, members of research ethics committees (RECs) face challenges when reviewing genomic research (Huanhuan et al, 2021). For instance, RECs in LMICs might lack the necessary expertise (Ochieng et al, 2020) and fail to realize the proper recognition of their exact roles and levels of oversight when reviewing genomic research (Azahar et al, 2023). Finally, the lack of national regulatory frameworks governing biobank research in LMICs might lead to inconsistency among RECs in reviewing such research (Vodosin et al, 2021).…”

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confidence: 99%

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

et al. 2023

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Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward these ethical issues. Our findings suggest that efforts are required to better familiarize REC members with the requirements for ethical biobank research. Additionally, we recommend that further research is undertaken with REC members regarding the main items that should be present in the Material Transfer Agreements /Data Transfer Agreements in their corresponding countries and the type of consent that should be used in genomic research.

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Section: Introductionmentioning

confidence: 99%

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

et al. 2023

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Current aspects in biobanking for personalised oncology investigations and treatments

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et al. 2023

Medicine and Pharmacy Reports

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Background/Aim. A biobank is an organization that gathers, refines, preserves and provides access to biospecimens along with relevant clinical data that can be used in applied or clinical research. Biobanking is a critical component of the scientific foundation for personalized medicine; this implies the accessibility of high-quality human biospecimens, such as blood, tissue, and other body fluids, along with the patient clinical data that goes with them. Methods. This paper summarizes the function of biobanks in oncology and the requirements for biobank development in translational and clinical research. Results. Biobanks raise numerous ethical issues that government agencies address by enacting particular laws. To develop personalized medicine, biobanks are crucial, given that the availability of an extensive collection of patient samples with thoroughly annotated clinical and pathological data is an essential necessity. Also, data related to biobanking raises complex ethical, legal, and social issues, particularly concerning the protection of donor privacy and the appropriate use of collected samples. International standards have been developed to address these issues to ensure biobanking practices’ quality, safety, and integrity. Conclusions. Biobanking is vital in advancing biomedical research, supporting clinical applications, and enhancing our understanding of human health and disease. Using real-world data and biobanking can accelerate medical research, support personalized medicine initiatives, and improve patient care.

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A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research

Cited by 2 publications

References 21 publications

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

Current aspects in biobanking for personalised oncology investigations and treatments

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