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Fulltext Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?

Abdul Aziz MF, Mohd Yusof AN

Asian Bioeth Rev, 2019 Jun;11(2):209-222.
PMID: 33717312 DOI: 10.1007/s41649-019-00086-2

As with many other countries, Malaysia is also developing and promoting biomedical research to increase the understanding of human diseases and possible interventions. To facilitate this development, there is a significant growth of biobanks in the country to ensure continuous collection of biological samples for future research, which contain extremely important personal information and health data of the participants involved. Given the vast amount of samples and data accumulated by biobanks, they can be considered as reservoirs of precious biomedical big data. It is therefore imperative for biobanks to have in place regulatory measures to ensure ethical use of the biomedical big data. Malaysia has yet to introduce specific legislation for the field of biobanking. However, it can be argued that its existing Personal Data Protection Act 2010 (PDPA) has laid down legal principles that can be enforced to protect biomedical big data generated by the biobanks. Consent is a mechanism to enable data subjects to exercise their autonomy by determining how their data can be used and ensure compliance with legal principles. However, there are two main concerns surrounding the current practice of consent in biomedical big data in Malaysia. First, it is uncertain that the current practice would be able to respect the underlying notion of autonomy, and second, it is not in accordance with the legal principles of the PDPA. Scholars have deliberated on different strategies of informed consent, and a more interactive approach has recently been introduced: dynamic consent. It is argued that a dynamic consent approach would be able to address these concerns.
Fulltext A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research

Azahar A, Mohd Yusof AN, Azhar ZI

Asian Bioeth Rev, 2023 Apr;15(2):141-154.
PMID: 37035484 DOI: 10.1007/s41649-022-00229-y

Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants' opinion on the current informed consent approach, understanding participants' rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants' knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.
Fulltext Human-Pig Chimeric Organ in Organ Transplantation from Islamic Bioethics Perspectives

Mohd Zailani MF, Hamdan MN, Mohd Yusof AN

Asian Bioeth Rev, 2023 Apr;15(2):181-188.
PMID: 36407413 DOI: 10.1007/s41649-022-00233-2

The use of pig derivatives in medicine is forbidden in Islamic law texts, despite the fact that certain applications offer medical advantages. Pigs can be one of the best human organ hosts; therefore, using human-pig chimeras may generate beneficial impact in organ transplantation, particularly in xenotransplantation. In Islam, medical emergencies may allow some pig-based treatments and medical procedures to be employed therapeutically. However, depending on the sort of medical use, emergency situation might differ. Using Islamic legal maxim as bioethical framework, the purpose of this study is to examine the use of pigs for the purpose of human-pig chimeric transplant from the perspective of Islamic bioethics. According to the findings, chimeric organ transplantation using pigs should only be done in emergency situations.
Fulltext A Rare Case Report of Unilateral Maxillary Mass from Adrenal Neuroblastoma

Mohamad Yusof AN, Saifudin N, Tengku Kamalden TMI

Indian J Otolaryngol Head Neck Surg, 2022 Oct;74(Suppl 2):1408-1411.
PMID: 36452747 DOI: 10.1007/s12070-021-02560-6

Neuroblastoma is the most common extracranial neoplasm among paediatric patients, which arises from ectodermal neural crest cells. The most frequent primary site of neuroblastoma arises from retroperitoneum, specifically in the adrenal medulla. We present a rare case of adrenal neuroblastoma metastasis to maxillary sinus in a 20 month-old boy presenting with right maxillary swelling for the past 2 months. Computed tomography (CT) scan of paranasal sinus demonstrated right maxillary mass. A biopsy performed via a sublabial approach, surprisingly revealed neuroblastoma. Subsequent further workup depicted a huge right adrenal tumour. He was diagnosed with adrenal neuroblastoma stage 4 and treated with chemotherapy and surgical resection.
Effective connectivity between precuneus and supramarginal gyrus in healthy subjects and temporal lobe epileptic patients

Husbani MAR, Shuhada JM, Hamid AIA, Suardi KPS, Abdullah MS, Latif AZA, et al.

Med J Malaysia, 2021 05;76(3):360-368.
PMID: 34031335

INTRODUCTION: The effective connectivity (EC) when the brain is resting and how a neuronal system exerts influence over other regions of the brain, in different groups of subjects are still being investigated. Limited information was seen about the relationship between precuneus (PRE) which is a wellknown resting state hub with supramarginal gyrus (SMG) in healthy subjects (HS) and temporal lobe epilepsy (TLE) participants.
MATERIALS AND METHODS: Fourteen HS and 14 TLE patients with age and gender matched underwent resting state functional magnetic resonance imaging (rsfMRI) scanning using a 3-Tesla MRI machine to investigate the EC and percentage of amplitude fluctuation (PerAF) involving SMG and PRE. The rsfMRI data were analysed using Statistical Parametric Mapping (SPM12) and Spectral Dynamic Causal Modelling (spDCM) from which causal models were specified, estimated and inferred.
RESULTS: Model with bidirectional connections between PRE and SMG was chosen as the winning model. The EC from PRE to SMG is positive but the EC from SMG to PRE is negative in both hemispheres and in HS and TLE. Based on the findings from the EC analysis, there is an excitatory effect shown by PRE to SMG connection indicating a dominant role of PRE over SMG in both groups.
CONCLUSION: There is important evidence showing that PRE might also have influence on areas outside resting state network and the influence changes in the presence of brain abnormality.
Willingness to Pay for National Health Insurance: A Contingent Valuation Study Among Patients Visiting Public Hospitals in Melaka, Malaysia

Tan RTH, Abdul Rasid SZ, Wan Ismail WK, Tobechan J, Tan ETY, Yusof AN, et al.

Appl Health Econ Health Policy, 2022 Mar;20(2):255-267.
PMID: 34927225 DOI: 10.1007/s40258-021-00691-z

BACKGROUND: The Malaysian public healthcare system is tax funded, with healthcare costs highly subsidized by the Government. The current health financing is not sustainable to cover all the healthcare resources. Introducing a national health insurance (NHI), a prepayment method, would protect the population from financial hardship by reducing out-of-pocket payment, minimizing the barrier to accessing health and achieving equitable healthcare. Studies on the willingness to pay (WTP) for NHI are available in different contexts; however, little was found in Malaysia. In addition, factors affecting the WTP for NHI have been less researched in the Malaysian context.
OBJECTIVE: This study investigates the WTP for NHI and factors influencing it in Melaka, Malaysia.
METHOD: Using the contingent valuation method, the researchers distributed a pre-tested self-administered questionnaire to 489 respondents in three leading public hospitals from 1 to 9 November 2019. Multi-stage sampling forms the selection of respondents. Respondents were presented with a hypothetical scenario on NHI and asked whether they would be willing to pay for NHI. Chi-square was used to examine the association between categorical independent variables and WTP for NHI, and binary logistic regression was applied to determine the variables with the most predictive effect towards WTP for NHI.
RESULTS: Out of 462 usable responses, 344 respondents (74.5%) were willing to pay for NHI. The majority (51.3%) of the respondents were willing to pay 15 Malaysian Ringgit (3.70 US dollars) or more for the NHI scheme. Chi-square analysis revealed that age, marital status, education level, employment status, chronic diseases, and perception towards NHI were significantly associated with WTP for NHI. Binary regression analysis found that marital status and perception towards NHI have the most predictive effect on respondents' WTP for NHI.
CONCLUSION: This study revealed that the majority of the respondents are willing to pay for NHI if implemented in Malaysia. The findings lay a foundation for implementing a future NHI framework in Malaysia and reference future health financing research.