Governance of research involving people with psychosocial disabilities.

Health-related research with human participants is governed by research ethics regulations in most jurisdictions. Globally, the 2016 International Ethical Guidelines for Health-related Research Involving Humans, published by the Council for International Organizations of Medical Sciences (CIOMS), are especially influential and widely held as an international standard. The CIOMS guidelines support the inclusion of people with psychosocial disabilities in research and offer clear guidance to promote their recruitment, including by outlining provisions for substitute decision-making.

A Case of Linear Scleroderma in a Young Child: A Diagnosis Easily Missed in Primary Care.

BACKGROUND This case illustrates the challenges in diagnosing linear scleroderma (LS) in a child who presented to a primary care setting. Diagnosis of LS is easily missed due to the lack of prominent symptoms, subtle visible skin changes, and under-recognition of this condition. CASE REPORT A 7-year-old boy presented with a linear, painless, non-itchy rash at the center of his forehead, which has been present for 6 months.

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

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.

Human-Pig Chimeric Organ in Organ Transplantation from Islamic Bioethics Perspectives.

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.

Honouring Wishes of Patients: An Islamic View on the Implementation of the Advance Medical Directive in Malaysia.

An Advance Medical Directive (AMD) is a document in which competent patients express their wishes regarding their preferred choice of future medical plans in the event they become incompetent. AMD is important in relation to the patient's right to refuse treatment. However, they must also consider cultural and religious values of different communities.

Sharing Information on COVID-19: the ethical challenges in the Malaysian setting.

The COVID-19 pandemic has raised challenges in dealing with information sharing by the public and the authorities. There are two categories of information sharing on social media that are believed to be potentially problematic and unethical: the sharing of personal information of patients and the sharing of fake news or false information. We present a discussion on how the response to the COVID-19 pandemic in Malaysia can be ethically handled in terms of information sharing.

Should the Decisions of Institutional Review Boards Be Consistent?

In response to increasing concerns regarding inconsistency in the decision-making of institutional review boards (IRBs), we introduce the decision-maker's dilemma, which arises when complex, normative decisions must be made regularly. Those faced with such decisions can either develop a process of algorithmic decision-making, in which consistency is ensured but many morally relevant factors are excluded from the process, or embrace discretionary decision-making, which makes space for morally relevant factors to shape decisions but leads to decisions that are inconsistent. Based on an exploration of similarities between systems of criminal sentencing and of research ethics review, we argue for a discretionary system of decision-making, even though it leads to more inconsistency than does an algorithmic system.

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

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.