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. In Islam, there are several concerns that need to be addressed, namely the validity of the AMD according to Islamic jurisprudence and patients' right to end-of-life decision-making. To address these concerns, this article refers to multiple sources of Islamic jurisprudence, such as the Quran, the tradition of Prophet Muhammad and the works of Islamic scholars related to this topic. Based on the findings, Islam does not forbid the use of AMD as a method to honour patients' wishes in their end-of-life care. Islamic jurisprudence emphasises on the importance of seeking patients' consent before carrying out any medical procedures. However, several conditions need to be given due attention, such as: i) a patient's cognitive capacity during the process of drawing up an AMD; ii) the professional views of medical experts; iii) the involvement of family members in end-of-life care and iv) the limitations of a patient's decision-making in creating an AMD.

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. The CIOMS guidelines sit alongside the United Nations' Convention on the Rights of Persons with Disabilities (CRPD). Adopted in 2006 and ratified in 2008, the CRPD offers a robust framework for recognizing the rights of persons with disabilities, including individuals with psychosocial disabilities. Though the CRPD does not explicitly reference research inclusion, its core principles-especially pertaining to the right to universal legal capacity-have clear implications for research ethics governance, specifically with respect to the use of substitute decision-making for research participation. In this paper, we review the extent to which existing research ethics regulations across selected jurisdictions concord with each of these two frameworks, offering first a broad analysis of regulations across 26 African countries, and then exploring two country-specific case studies from Malaysia and Peru. We find that, while many countries' research ethics regulations align with key aspects of the CIOMS guidelines, core principles of the CRPD are absent. Given the shortcomings of existing regulations, we analyse a key point of tension between CIOMS and the CRPD-the right to participate in research-and offer a proposal for revised regulations that aims to bridge this tension and meet the standards of both frameworks.

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. The rash extends vertically from the hairline to the bridge of the nose. The color gradually evolved from reddish to purplish-grey and shiny within 3 months. He had underlying eczema, allergic rhinitis, and allergic conjunctivitis since birth. His condition remained unrecognized despite consultations with various medical specialties, including family medicine specialist, ophthalmologist, otorhinolaryngologist, and a general pediatrician. Six months after the onset of his lesion, he was subsequently referred to a pediatric dermatologist and pediatric rheumatologist, who made the diagnosis of LS. Laboratory investigations for autoimmune disease showed that negative antinuclear antibodies (ANA) and inflammatory markers, including erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP), were normal. Skin biopsy provided a tissue confirmation of the diagnosis. MRI of the lesion showed no extension into the underlying muscle or bone erosions. The patient was initially treated with intravenous (IV) methylprednisolone for 3 days, followed by oral methotrexate weekly and prednisolone. The lesion improved after 1 month of treatment, and after 15 months it was less pigmented and less noticeable. CONCLUSIONS LS is the commonest form of localized scleroderma in children. LS on the forehead can erode into the underlying tissues and is sometimes associated with extensive hemifacial atrophy. Treatment should be instituted early to prevent late irreversible fibrotic sequelae. This report aims to highlight the importance of early diagnosis and treatment of an uncommon but potentially disfiguring condition.

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. It is recommended that the public should cultivate the basic skills to evaluate information and determine its validity. On the other hand, the authorities should refrain from placing the blame on patients to avoid them from being stigmatized. It is crucial that all parties are aware of their ethical duty to ensure only ethical and valid information gets shared on social media.

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. We conclude with a discussion of some safeguards that could improve consistency while still making space for discretion to enter IRBs' decision-making processes.