Abstract
Organ donation and transplantation are integral components of modern medicine. This scoping review thoroughly explores the historical evolution, current status, and future prospects of organ donation and transplantation in Malaysia. Historically, Malaysia faced significant challenges in establishing a robust organ transplantation system, with various factors hindering organ donation efforts. Currently, Malaysia continues to struggle with stagnant donation rates despite collaborative efforts from various sectors. There is an urgent need to amend the 50-year-old Human Tissue Act to strengthen the legal framework for organ donation and address ethical concerns. Looking to the future, Malaysia could adopt a soft opt-out system and prioritize advancements in organ preservation techniques by exploring new sources of organs through the donation after circulatory death program. Continued efforts are necessary to enhance education programs for professionals and the public, dispelling myths about organ donation and effectively educating on the concepts of brain death. Malaysia strives to create a more accessible future for organ transplantation, aligning with the Sustainable Development Goals to reduce the burden of organ failure and improve the population’s health and well-being.
Organ donation is one of the miracles of modern medical science and is the best, if not the only, lifesaving therapy for patients with end-stage organ failure [1]. Human organs are invaluable gifts that have saved thousands of lives and bestowed hope and enhanced quality of life upon many others through organ transplantation. This practice not only potentially improves the lives of numerous patients on waiting lists but also allows each deceased donor to save an average of eight lives [2]. While organ donation is a well-established practice in the Western world, it remains limited in developing countries [3]. Malaysia, like many developing nations, faces a significant gap between the number of organ transplants needed and the number of transplants performed. Despite over 30 years having passed since its first organ transplant, the total number of transplants conducted in Malaysia is still disappointingly low [4].
Malaysia was one of the pioneering countries that permitted organ donation in the 1970s [5,6]. Despite this early start, the country continues to experience a chronic shortfall in available organs for transplantation [7–9]. The gap between the supply of and demand for transplant organs is notably large. As of September 2023, there are approximately 10,775 patients in Malaysia waiting for organ transplants. The majority are kidney patients, with 10,366 adults and 385 children making up this group [10]. Additionally, Malaysia has one of the lowest deceased organ donation rates in the world, with only 0.7 donations per million population (pmp) recorded in 2022 [11]. To provide more context, data from the past 6 years show a significantly lower number of kidney transplants from deceased donors, as detailed in Table 1 [11]. Despite ongoing efforts to achieve self-sufficiency in organ transplantation, the growing number of patients on the waiting list and the persistent shortage of organ donations highlight the challenges that remain. In an effort to address this disparity, the Malaysian government has been actively working to improve the situation for the past 50 years.
The history of organ transplantation in Malaysia started with the enactment of the Human Tissues Act in 1974 to facilitate organ donation [12], followed by the establishment of a national transplant program in 1975. Subsequently, the National Transplant Resource Centre (NTRC) was formed in 1997 to lead the organ donation efforts [10]. In addition to these formal measures, Malaysia embarked on a public relations campaign to raise awareness about organ donation. In 1999, it established the Action Committee for Public Awareness on Organ Donation, which involved healthcare providers at both the federal and state levels to conduct groundwork, including awareness campaigns [13]. To organize the information collected about patients who had undergone organ or tissue transplantation, the National Transplant Registry was developed in November 2003. This registry has proven useful for practitioners and assists the Ministry of Health (MOH), nongovernmental organizations (NGOs), private providers, and the industry in planning and evaluating transplant services in the country [14]. Given the significant shortfall in organ donations, Malaysia has taken steps to encourage living donations not only from relatives in 2007 but also from unrelated living donors in 2011. The country introduced a policy statement on unrelated living donation and strengthened its existing transplant policies by implementing specific procedures and providing reasonable reimbursement to encourage donations from altruistic individuals [15,16].
As a predominantly Muslim country, Malaysia has aligned its stance on organ donation with that of the Grand Mufti of Egypt, who issued the first modern fatwa—an Islamic legal pronouncement—authorizing organ donation in 1966 [6]. Following this, Malaysia’s fatwa council (Islamic Religious Council) quickly issued an order permitting organ donation and transplantation [17]. In a significant later development, specific guidelines for Muslims were established in 2011, allowing Muslims to donate organs to non-Muslims. This addressed a major concern among Muslims regarding whether Islamic law permits the donation of organs between Muslims and non-Muslims [18]. From the inception of the legislation to the establishment of a leading national agency and the development of policies, as well as considering religious aspects, it is clear that a considerable amount of resources and effort has been invested in engaging all stakeholders and the public. Despite comprehensive coordination involving multiple stakeholders and full government support, organ donation has struggled to gain widespread acceptance in the country. The low number of registered organ donors, along with low donation rates, highlights the challenge, not to mention the limited number of actual deceased donors. From 1976 to the present, the rate of registered organ donors in the country has barely surpassed 1% of Malaysia’s population [10].
To our knowledge, no comprehensive review has been conducted to assess the impact of research related to the organ donation and transplantation system in Malaysia, particularly concerning policy, religious affairs, education, and legal frameworks. These factors are crucial for the success and improvement of the system from past to present and into the future. The primary research question guiding this review is to explore the extent of research conducted in the context of organ donation and transplantation in Malaysia over the past quarter-century. This exploration aims to understand how various studies in different aspects have influenced the country’s progress and direction in this field. A scoping review is particularly relevant here because it allows the authors to include a variety of study designs from both published and grey literature. This approach enables us to address questions beyond those related to the knowledge and perceptions of people, medical interventions, and the sufficiency and effectiveness of legislation governing the organ donation system in Malaysia.
A scoping review was conducted to synthesize evidence from diverse study designs, aiming to clarify key concepts and identify gaps in the published literature, following the methodology outlined by Arksey and O’Malley [19]. This approach is particularly effective for exploring topics that are widely discussed, as it allows for a comprehensive and systematic examination of the literature's scope. It also facilitates the identification of theories, evidence, and research gaps within a specific topic, field, or issue across various contexts [20–24]. In contrast to systematic reviews, which are narrowly focused on a single question and aim to summarize the best available research to support clinical decision-making or assess risk of bias [25,26], scoping reviews offer a broad overview of a less defined subject by mapping out evidence from a range of sources [21,24].
Recent advancements in scoping review methodology, notably by Levac et al. [20] and further refined by a working group from the Joanna Briggs Institute (JBI) in 2017 [27], prompted an updated review in 2019. This review utilized the JBI framework for scoping review methodology and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews) [27]. Given the absence of a comprehensive review of the research question, the authors decided to conduct a scoping review to gather all available evidence on the topic before pursuing more detailed investigations. The objectives of this scoping review are to summarize the collective research conducted on the organ donation system in Malaysia over the past 25 years. This includes synthesizing the findings and recommendations to enhance the organ donation rate in the country.
The review was structured around a population, concept, and context question, as recommended for scoping reviews by the JBI (Table 2) [27]. The search strategy for the study involved identifying relevant literature across several databases: PubMed, MEDLINE, Cochrane Library, Science Direct, and Google Scholar. Systematic searches utilized descriptors such as "organ donation," "organ transplantation," "tissue donation," "tissue transplantation," and "Malaysia," combined with the Boolean operators "AND" and "OR." All searches were restricted to articles written in English. To ensure no relevant publications were overlooked, the reference lists of included articles were meticulously hand-searched. Table 3 presents a summary of the search terms employed.
The selected literature was evaluated for its significance and relevance based on content and publication type. Subsequently, studies were included in this scoping review if they met all the following eligibility criteria: (1) original articles published in peer-reviewed journals, including research papers and case reports; (2) grey literature; and (3) articles written exclusively in English. Other manuscript types were excluded, such as book chapters, reviews, editorial notes, unpublished manuscripts, commentaries, and conference abstracts. However, full articles published in academic conference proceedings that are available were also included.
After identifying articles in the aforementioned databases, they were imported into EndNote X6 software (Clarivate), and duplicates were removed. The eligibility criteria were then applied to perform a preliminary screening of the articles based on their titles and abstracts. The authors critically reviewed all retrieved studies and selected relevant articles. The titles and abstracts were independently screened for eligibility by the authors. Subsequently, the full texts of the articles were accessed to determine their eligibility for inclusion in the review. This process is depicted in Fig. 1, which illustrates the PRISMA-ScR selection process flow diagram, as this review adheres to the PRISMA-ScR guidelines.
A total of 10,365 articles were identified through initial searches using keywords in various databases: PubMed/MEDLINE (n=97), Cochrane Library (n=0), Science Direct (n=538), and Google Scholar (n=9,730). After removing 10,259 duplicates, 106 articles were screened, and 101 of these were fully retrieved and reviewed. Subsequently, 90 articles met the inclusion criteria, which excluded book chapters, unpublished projects, concept papers, conference abstracts, and technical reports. However, 20 articles were subsequently excluded due to duplication and irrelevance, leaving a total of 70 articles from the databases. Additionally, three other studies were included from previous research conducted by undergraduate and postgraduate students at Universiti Teknologi MARA and the University of Malaya, respectively. Four more studies were included in the scoping review from other sources. Fig. 1 illustrates the comprehensive review process for study selection. The articles included in the scoping review are summarized in Supplementary Table 1 [3,4,7,9,13,28–99].
The publications reviewed spanned from 1996 to 2023. The earliest study appeared in 1996, with only two more articles following in 1998 and 2000. Over the next 5 years, a single article was published in 2005. There was a noticeable gap until 2010, when four articles were published. After 2012, there was a steady increase in research output, culminating in 58 articles published between 2013 and 2023. This trend indicates a growing interest in the field over the last decade. The scope of the review was limited to articles related to organ and tissue donation and transplantation within the Malaysian context.
In total, 77 articles were reviewed, all of which were conducted and compiled in Malaysia. The majority of the researchers were Malaysian, although there were a few coauthors from other countries. This predominance of Malaysian researchers can be attributed to the high level of concern in Malaysia regarding organ donation and transplantation. Various interest groups within the country have explored this issue from multiple perspectives, including legal, ethical, medical, social, cultural, and religious aspects. These studies span over 25 years, examining the evolution of research and its impact on transforming Malaysia from the past to the present, and discussing prospects for the future of the country.
Malaysia adopts an opt-in or informed consent system for cadaveric organ donation, which requires the explicit consent of the potential donor. In other words, a person's organs can only be removed posthumously if they have clearly stated their willingness for such removal [8]. This means that individuals must declare their intention to donate their organs while alive by pledging to be organ donors upon death under the opt-in system. The Human Tissues Act 1974 is the only legislation that regulates organ donation and transplantation in Malaysia [12]. A review of the literature revealed 12 studies related to this legislation, primarily focusing on its deficiencies and the need for reform. Most authors have advocated for a prompt legislative overhaul [28], suggesting the adoption of an opt-out law [29] or a presumed consent system [33,42,57,60], terms that are often used interchangeably. The shortcomings of the current Malaysian Human Tissues Act 1974 have also contributed to the country's organ shortage issues [33,42]. Despite being in force for nearly half a century, the act has never been reviewed [8,42], nor has it been supplemented or amended. Remarkably, it may be one of the shortest pieces of legislation in Malaysia, with only five sections to its name [8] and printed on two pages [12].
The law's lack of a clear definition of "the person lawfully in possession of the body" leads to vague interpretations and misunderstandings. Additionally, the legislation does not address the removal of organs from deceased individuals, which raises concerns about authority and autonomy over the deceased's body [28]. Furthermore, the legislation does not cover the donation of tissues or cells, leading to complex ethical questions. Moreover, the law does not specify a hierarchy of relatives considered next-of-kin. In cases involving numerous relatives with differing opinions, this absence can create significant challenges. Establishing a priority list is particularly problematic in Malaysia, a multicultural society where the hierarchy of relatives and their decision-making powers can vary across different cultures [33,42,49]. Syed Ismail [28] correctly notes that the spouse and next-of-kin may effectively veto the presumed wishes of the deceased regarding organ donation, even if the deceased had not objected. Additionally, there is an urgent need for legislation to protect the rights of potential live donors. Currently, the Human Tissues Act 1974 applies only to cadaveric donors, leaving live donors under the jurisdiction of common law [33,42,49].
The scarcity of organ donors has prompted patients to travel to countries like India and China to purchase organs, particularly kidneys, for transplantation [100–103]. This has contributed to the emergence of an illegal international organ trade, where individuals from Malaysia [103] seek organs through unauthorized commercial transactions abroad [104,105]. An opt-out organ donation system could potentially address this issue by increasing the availability of donated organs [8]. In such a system, implemented in Malaysia, it would be presumed that every individual is a donor unless they have registered their objection [33,42]. In other words, a presumed consent system could potentially boost donation rates, but it requires thorough investigation and review [57]. It is especially important to explore Muslims’ perceptions of this system, as their views are critical [60]. As a country with diverse races and religions, it is essential that the system is implemented fairly. This can be achieved by ensuring that every individual is well-informed about the law and its implications, and by providing a straightforward and effective mechanism for registering objections [33,42].
In another study done by Muda Ismail [37], the author suggested amending Section 2 of the existing Human Tissues Act to address issues of consent and prevent family influence from becoming overly authoritative. The study identified family rejection as the primary barrier to the low number of actual donors in Malaysia. Similarly, without adopting an opt-out system, Gan Kim Soon et al. [73] recommended facilitating kidney chain donations or domino paired donations to alleviate the organ shortage. Conversely, Naghavi et al. [80] noted the availability of opt-in, opt-out, and presumptive approach organ donation systems. The findings from this study challenged the current opt-in system, advocating for a presumptive approach as a more effective method to increase the deceased donation rate in Malaysia. This approach aims to systematically obtain permission and address family objections. The techniques used in approaching families are crucial in increasing authorization for donation. For example, the decoupling technique, which separates the notification of death from the organ donation request, is one effective strategy. Furthermore, Syed Ismail [28] proposed adopting an express-consent model for organ procurement from deceased donors as the preferred public policy. This model allows the family of an undeclared potential donor to give consent on their behalf. This approach is deemed most suitable for a multireligious, multicultural, family-oriented society like Malaysia, as it is politically feasible and likely to garner cooperation from all stakeholders.
To address the disparity between the demand for and supply of organs, Badrolhisam and Zakaria [41] have advocated for the consideration of death row inmates as potential organ donors, which would necessitate changes to existing legislation. Conversely, Gan Kim Soon et al. [73] suggest integrating organ donation registration with driver’s license applications, drawing on successful implementations from the United States, United Kingdom, Australia, Canada, New Zealand, and South Korea. In the realm of technological advancements, Abdul Majid [76] recommends bioprinting as a solution to combat illicit organ trading and transplantation within Malaysia, aiming to alleviate organ shortages and curb illegal organ trafficking. Bioprinting involves "the spatial patterning of living cells and other biologics by stacking and assembling them using a computer-aided layer deposition approach to develop living tissue and organ analogues for tissue engineering, regenerative medicine, pharmacokinetic, and other biological studies" [106]. According to the study, bioprinting offers a range of possibilities for saving more lives by creating living tissues with a bioprinter, using human cells and a digital construction model of biological structures.
Malaysia is one of the countries in Asia with notably low rates of deceased donor pledges, despite its relatively good education system [58]. Numerous studies have been conducted to assess the awareness of organ donation among both healthcare professionals and the general public. In these studies targeting medical professionals, the majority of respondents recognized the need for organ transplantation in Malaysia. However, when it comes to technical understanding of concepts such as brain death, and the procedures for withdrawal and discontinuation of life support in brain-dead patients, most respondents admitted to a lack of understanding and training [29,31,47,53]. Zainal Abidin et al. [47] demonstrated that a generally passive approach to approaching families of potential donors and activating transplant teams, along with a widespread misunderstanding of brainstem death among health professionals, has contributed to the organ shortage in the country. Although most respondents reported receiving information about brain death during their professional training in medical or nursing schools [31], some doctors believed that only neurologists could certify brain death [47].
To address the dilemma of organ shortage, numerous studies have explored factors influencing organ donation [56]. Generally, these studies indicate that healthcare professionals [56,71,92,99] and medical students [55,69,90] possess a solid foundational knowledge of organ donation and transplantation. The findings suggest that doctors are more knowledgeable than nurses [71,83,92] and health assistants [99]. These studies have also shown that the knowledge level of healthcare professionals can affect the identification of potential donors and the initiation of the donation process [71], particularly when they are convinced of the validity of brain death and view organ transplantation as a beneficial treatment [83]. Among various healthcare disciplines, Foong et al. [71] noted that professionals in the emergency department scored the lowest in terms of knowledge about brain death, deceased organ donation, and organ transplantation. This is concerning given the critical role of emergency department in the early identification and referral of potential brain-dead patients. Additionally, three interventional studies were conducted on nurses [85,97] and healthcare workers [91] to assess the impact of different health education programs on their knowledge of organ donation [91,97], including the maintenance of organs, brain death, and the role of nurses [85]. The knowledge scores from pretests and posttests among participants showed significant improvement following the educational interventions, which included lectures [85], website-based educational materials [91], and both pamphlet-based and video-based health education [97].
Apart from surveys, several retrospective studies were conducted by collecting clinical data from intensive care units (ICUs) [32,98] and the NTRC [87]. The findings were particularly alarming when Attamimi et al. [87] reported that out of 322 suspected or probable brain death admissions, 170 cases either had incomplete brain death tests or no brain tests conducted at all. Similarly, Ismail et al. [98] reported that out of 819 patients admitted to the ICUs during the study period, only 56 were identified as potential organ donors. However, none of these 56 patients were referred to the hospital’s organ donation or transplant coordinator, nor did any of them become actual donors. Our organ donation program faces several significant challenges, including a lack of awareness among medical personnel about organ donation, insufficient facilities to support brain-injured patients who may require optimization of blood pressure and fluid status before an organ harvest operation [32], and a passive attitude among healthcare professionals [47] and transplant coordinators [87]. These issues represent a mix of clinical and nonclinical barriers [87,98].
Meanwhile, a number of studies have surveyed the general public's basic knowledge of organ donation and transplantation, with varying results across different demographic groups. The majority of the public, including university students, demonstrated limited knowledge of deceased organ donation [13,39,41,48,75]. In contrast, university staff and relatives of patients awaiting treatment in hospitals exhibited a good understanding of organ donation [4,63]. Interestingly, regardless of whether respondents had good or poor knowledge of organ donation, only a few had registered as organ donors [4,39,48,57,69,75]. Most studies have found that greater knowledge about organ donation correlates with a higher willingness to donate organs [13,39,45,79], especially among individuals who received information from organ donation awareness campaigns [81]. However, studies by Loch et al. [4] and Tengku Anuar et al. [96] presented contrasting results, finding no significant relationship between knowledge of organ donation and the intention to donate. This was supported by Tumin et al. [45], who noted that respondents with higher tertiary education also lacked knowledge about organ donation, which contributed to their reluctance to become living organ donors. In Malaysia, despite extensive knowledge dissemination, most people were still unwilling to donate kidneys, indicating no significant link between knowledge and the willingness to donate a kidney [89]. A study conducted in Sarawak showed that the urban population, having more exposure and awareness, possessed greater knowledge about organ donation compared to their rural counterparts [84].
An attitude can be defined as a positive or negative evaluation of people, objects, events, activities, or anything in the environment. It represents a psychological tendency expressed by evaluating a particular entity with some degree of favor or disfavor [107]. The attitude of an individual toward organ donation is influenced by personal perceptions and beliefs, as many studies have reported. These studies aimed to assess public attitudes toward organ donation and their willingness to donate. The findings revealed that attitudes ranged from favorable [4,36,63,96] and average [41,55,65,89] to negative [75,90] toward deceased organ donation and transplantation. A variety of myths and misinformation emerged from discussions about perceived risks, which contributed to a reluctance to donate organs. For example, concerns included body parts missing after death [4,29,77,90]; medical side effects such as infections, pain, bleeding, body weaknesses, anxiety, and depression [3,68]; misuse of organs for research [3,4,63]; illegal organ trading [3,4]; fears that doctors would not do everything possible to save a patient's life if they were known to be a donor [4,73,93]; beliefs that donation was against one's religious beliefs [4,29,52,65,68,73,77,89,90,93,95]; discomfort with the idea of one's organs in another person's body [4,29,77]; lack of confidence in the medical profession [4,65,68,89]; negative influence from family and friends or family disapproval [9,52,65,68,73,81,90,93]; perceptions that organ donation is akin to mutilating the dead and violates the person’s dignity [73,77,93]; beliefs that organ donation disturbs the peace of the deceased [77]; fears of the surgical process and disfigurement [9,29,77,90]; and concerns that the deceased experience pain after death [52,93].
The majority of Malaysians believe that donating organs after death is humane [77], and positive attitudes toward organ donation can lead to becoming an organ donor [96]. However, Emdadul Haque et al. [55] have pointed out that a favorable attitude toward organ donation and the willingness to pledge organs [69] do not guarantee a commitment to donate. Factors such as attitudes, spiritual beliefs, altruism [70,81], family influence, mass media [78], and financial incentives [82] have been identified as significant predictors of the intention to donate organs, particularly within the Malay community's perception of organ donation [40,95]. These findings align with those of Zanuddin et al. [65], who noted that when an individual harbors a negative salient belief about the outcomes of organ donation and transplantation, this is considered a negative attitude, which in turn discourages the individual from engaging in the behavior of becoming an organ donor. Conversely, a positive attitude fosters the intention to pledge as an organ donor [89]. This is supported by the research of Syed Annuar et al. [67], which demonstrated that celebrity authenticity and charisma play crucial roles in shaping public attitudes toward organ donation. The use of celebrities is no longer confined to commercial advertising but has also been extensively employed in nonprofit causes such as organ donation. A charismatic figure can be immediately judged by message recipients and serves as a reference point among Asians when making personal decisions, including those about organ donation [67].
In general, public perceptions play a crucial role in shaping organ donation policies within a country [80]. Badrolhisam and Zakaria [41] have suggested legalizing organ donations from death row prisoners, drawing inspiration from practices in China, Singapore, and Taiwan, to help bridge the gap between organ demand and supply. In their 2012 study on perceptions of organ donation from death row prisoners, the authors found that 32.4% of nonpatients and 8.5% of patients would accept organs from this source, while 20.7% of both groups would not. Additionally, 38.5% were undecided [41]. Since this is the only study in the past 25 years and it has a relatively small sample size, it is difficult to generalize these findings to the entire Malaysian population. Therefore, more comprehensive studies with robust methodologies are necessary to validate and extend these findings to a practical context.
Unlike the more homogeneous populations found in Asia, Malaysia is a unique, multiracial country comprising three main ethnic groups: Malays, Chinese, and Indians, with a total population of 33.5 million [108]. The current ethnic distribution is as follows: Malays make up 65% of the population, Chinese 21%, Indians 6%, and other groups 0.7% [109]. Although these groups have coexisted harmoniously for at least three generations, significant differences exist in their cultural and religious beliefs. All Malays are Muslims, while the predominant religions among the Chinese and Indians are Buddhism and Hinduism, respectively. However, Christianity is also gaining popularity among the non-Malay populations [4]. The diverse racial composition of Malaysia provides a valuable opportunity to explore the unique sociodemographic profiles related to cadaveric organ donation and its implications for organ donation and transplantation rates. This aligns with findings that suggest donation perceptions are the most significant factor influencing organ donation rates, followed by socioeconomic status and demographic factors [80]. Over 70% of the articles included in this scoping review utilize questionnaire surveys, primarily focusing on collecting sociodemographic data.
All studies have consistently shown ethnic differences in attitudes toward organ donation. Specifically, ethnicity is a predictor of the willingness to donate organs. Malays demonstrated a lower willingness to donate than Chinese and Indians [4,7,9,29,38,39,52,59,77,89,93,99], including among healthcare professionals [72,81,83]. However, it is important to note that the majority of Malays are not opposed to organ donation in general. Interestingly, Malays constitute the majority of organ transplant recipients in many areas [4]. Ethnicity and religion are closely linked in Malaysia, where all ethnic Malays are Muslims, as stipulated by the Malaysian Constitution. In our study, Malays of the Muslim faith were the largest ethnic group, mirroring the demographic composition of the general population in Malaysia. They were significantly less willing to donate compared to other religions and ethnicities [83]. Studies have shown that Muslims are less inclined toward organ donation than Buddhists and Hindus [38,50,69,81,83,92,93,99]. Bhandary et al. [38] and Wan Abdul Halim et al. [99] reported that Indians, particularly Hindus, displayed a more positive attitude toward organ donation compared to other ethnicities and religions. This positive stance is attributed to the Hindu belief in karma, which holds that good deeds will be reciprocated in the afterlife, thereby influencing their favorable view on organ donation in this study.
Apart from ethnicity and religion, factors such as age group, education level, and household income were associated with the decision not to pledge as an organ donor [52]. Studies have shown that younger age groups, ranging from 18 to 45 years [38,77], 18 to 29 years [52], 18 to 30 years [7,81,93,99], less than 24 years [90], and with a mean age of 29.4 years [92], tend to have a more positive attitude toward organ donation. Additionally, some studies have indicated that females are more willing to donate organs compared to males [50,65,93], although other studies have reported the opposite [38,52,81,83,90,92,99]. While Tumin et al. [59] noted that sex and household income were not significant predictors of willingness to donate, other studies have observed significant roles for socioeconomic factors, such as income and education level, in shaping beliefs and influencing opinions on donation and the decision to pledge [62]. In fact, individuals with higher education levels (tertiary or graduate and above) [38,52,81,93] and those in high-income groups [7,79,92,99] are significantly associated with a positive attitude toward organ donation. Interestingly, Rasiah et al. [50] reported that, contrary to previous studies, respondents with lower education levels, who primarily constitute low-income earners, are more willing to donate than high-income earners. It is evident that the highest number of nonorgan donors is among the Muslim religious group [69]. Malays, who make up 65% of the population but only 6% of all donors, have the potential to be the largest donor pool in Malaysia if their willingness to donate can be improved [4,83].
The subject of organ donation and transplantation is fraught with a myriad of medical, legal, ethical, and moral questions [8]. In places like Malaysia, where religion and culture are deeply intertwined with state policies and legislation, a comprehensive assessment of organ donation and transplantation must consider the significant influence of religious and cultural norms and practices [8]. Malaysia, a multiracial country, is home to a diverse mix of religious beliefs. Many religious authorities in the country have endorsed organ donation [63]. Most Christian members view organ donation as a commendable act of devotion to both God and humanity [110]. Jewish scholars, meanwhile, support organ donation as it aligns with a core value in Judaism: saving a life [110]. Similarly, Hinduism and Sikhism allow organ donation, emphasizing the importance of performing good deeds [99,110]. In Islam, although opinions on organ donation vary, the majority of scholars, authorities, and institutions view it as a noble and highly recommended act [63]. Additionally, many Islamic scholars agree that organ donation aligns with the maqasid syariah, an objective of the syariah that must be upheld. The moral code in Islam prioritizes the “prevention of harm over beneficence” [64] and “necessity overrules prohibition”—thus, there is no objection to organ donation [111].
Despite numerous laws and policies addressing organ donation and the approval of the fatwa council regarding organ donations, the rate of deceased organ donations among Muslims in Malaysia remains low. This has prompted scholars and researchers to investigate why Malaysians, particularly Muslims, are hesitant to become organ donors, leading to numerous studies on the subject. The findings reveal several reasons why Malaysian Muslims are reluctant to pledge their organs, despite the majority believing that Islam permits organ donation [44,60,61,63,77,78,92,95]. One contributing factor to Malaysia’s low donation rate is the uncertainty among Muslims about Islam’s stance on organ donation [38,44,56], coupled with misconceptions about Muslims donating and receiving organs from non-Muslims [4,86]. It is apparent that many Malaysian Muslims perceive organ donation as equivalent to abusing the human body, which they believe belongs to God [36,77,86]. Additionally, there is a lack of information about organ donation and a general mistrust in the government's ability to manage organ donation procedures effectively [32,36,40,44]. Misinterpretations of religious teachings on organ donation [32,40,86] and doubts about whether the handling of a Muslim's body will adhere to Islamic rules and regulations also contribute to the reluctance [35]. The situation is further complicated by the beliefs of Muslim healthcare professionals who consider the removal of organs from patients declared brain dead for transplant purposes as impermissible in Islam [56]. When this lack of knowledge among healthcare professionals about organ donation and brain death intersects with their theological beliefs, it results in a significant barrier to procuring donated organs for transplantation. Contrary to these findings, some survey results indicate that religion is not the main deterrent to organ donation, and that religious and cultural factors are not significant determinants in the decision-making process of Malaysian Muslims regarding organ donation [44,71,95].
Another interesting finding from these studies is that organ donation was against one’s religious beliefs [29,36,95], with Islam presenting a barrier to organ donation among Muslims [65] as their bodies must remain in perfect condition [95]. Muslim scholars have stipulated that both the donor and recipient must be Muslim if the surgeon is also Muslim [112]. However, a study by Ibrahim et al. [58] revealed that this condition is not strictly adhered to in Malaysia, as the country follows the World Health Organization's guiding principles for implementing organ transplant procedures. The study concluded that the religion of the surgeon, donor, or recipient should not be a significant factor in organ transplantation procedures, emphasizing that patient safety must be the priority [58]. The requirement for the surgeon to be Muslim has sparked debate and could potentially harm the patient and complicate matters for the nation as a whole. In another study, a small group of Muslim respondents indicated they would still donate their organs even if the fatwa or statement issued by the Islamic Scholar Council advised against it [41].
The two primary sources of Islamic law are the Quran, the direct word of God, and hadith, which reflects the intentions and actions of Prophet Muhammad. Although organ donation is not explicitly mentioned in these texts [63], the majority of Islamic scholars have concluded that organ donation is permissible and considered "halal" or permissible. Despite this, there remains a hesitancy or reluctance among Muslims to donate organs after death. Even with clear guidelines on the permissibility and limitations of organ donation, some individuals still harbor misconceptions and misinterpretations that lead to their refusal to become donors. Previous focus group discussions revealed that while organ donation is generally viewed positively, misconceptions, cultural myths, and ethnic sensitivities play significant roles in limiting organ donation [36,89]. Malaysian Muslims are not opposed to organ donation; however, promoting it effectively requires the state to address public concerns about Islam’s stance on this sensitive issue through well-crafted policy tools that effectively reach the target population [61]. In this context, the organ donation rate could be enhanced by employing Islamic scholars as ambassadors for organ donation campaigns, using iconic Muslim personalities to highlight Malaysia’s urgent need for organ donations [54], and deploying effective and culturally appropriate public relations tools that resonate with Malaysia’s diverse communities.
No other form of treatment has attracted as much ethical, legal, and religious scrutiny as organ transplantation [50]. This is understandable, as organ transplantation uniquely involves two parties: the donor and the recipient. Organs must be donated voluntarily, and the exchange of any payment, compensation, or gifts for organs is strictly prohibited [58]. Rady and Verheijde [64] have proposed a minimal standard of prerequisite information that should be disclosed in organ donation campaigns at mosques to uphold the moral values of truthfulness and ethics, thereby guiding Muslim communities in making informed decisions about organ donation. In an effort to bridge the gap between the demand and supply of organs, Badrolhisam and Zakaria [41] have suggested that several potential sources of organ donors be taken seriously, not only by policymakers but also by the general public, including accepting organs from capital inmates. As of 10 October 2023, Malaysia has sentenced 906 inmates to the death penalty, with a total of 469 executions carried out since 1957 [113]. Although the number of executed inmates in Malaysia is relatively small compared to other countries [114], these individuals could potentially help meet the needs of others if the Malaysian government were to establish a policy allowing death row inmates to donate their organs. Potentially, the 216 executed inmates could have contributed to saving hundreds of lives if given the option to donate their healthy organs [41]. However, the Malaysian Medical Council [115] currently opposes the use of organs from executed prisoners, as it contributes to unhealthy and unethical practices that lead to the commercialization of organ transplants. This view is shared by Caplan [116], who expressed concerns that using death row prisoners as organ donors could incentivize countries to unjustly sentence prisoners to death, an approach that would be both immoral and inhumane.
The cadaveric organ and tissue donation rate was less than one donor pmp in 2008 [34], and the numbers have remained steady at 0.7 pmp through 2022 [11]. Abd-Wahab et al. [34] reported that the numbers of both potential and actual donors have steadily increased, with an improving conversion rate from medically suitable potential donors to actual donors. This improvement followed the establishment of the National Transplantation Procurement Management Unit (NTPMU) in 2001, which, along with active government intervention, has enhanced donor management, procurement coordination, staff training, awareness promotion, and data collection. The NTPMU collaborates with local Tissue and Organ Procurement teams at hospitals, which were established after 1999, as well as organ and tissue retrieval teams and recipient transplant teams. However, this study was published in 2010, and more recent studies have been conducted to enhance current governmental policies and directions.
Despite Malaysia's concerted efforts to bridge the gap between supply and demand for organs, the number of patients on the waiting list continues to grow, alongside a persistent shortage of organ donations [13]. The country has actively promoted organ donation, encouraging both related and unrelated living donors. While a policy exists, some authors have emphasized the need to establish a living donor registry, particularly for kidney donors, as 99% of patients on the organ waiting list are in need of kidneys [10,43]. The success of living organ donation relies heavily on public awareness and decision-making, which can be significantly bolstered by government policies. Although the number of living organ donors, including kidney donors, is increasing globally, it is declining in Malaysia. This suggests a significant potential to boost organ donation rates in the near future [43]. In line with this, Guad et al. [74] noted that living-related kidney donors are more prevalent than spousal kidney donors in Malaysia. They recommended considering spousal donors as a viable and safe option to alleviate the shortage of kidney donors in the country. Since most recipients of spousal renal grafts cohabit with their donors, this arrangement could potentially mitigate issues related to noncompliance with immunosuppressive medication, often linked to negligence and postoperative depression.
Scholarly discussions worldwide continue to support the introduction of some form of incentive-based organ donation [117,118]. Among the various financial incentives considered—such as cash payments, support for bereaved families, and covering funeral expenses [82]—financing funeral costs slightly moderated the relationship with the willingness to donate [82]. Additionally, providing medical benefits to surviving family members was seen as an attractive policy option for increasing the deceased organ donation pool [46]. This finding aligns with other authors who note that while the provision of incentives is considered in policy discussions, it also introduces challenges, including concerns that unrelated donations could encourage organ trafficking, promote transplant tourism, and lead to the overall abuse of donors and recipients [45]. In fact, Tumin et al. [46] conducted a survey to gauge interest in nonfungible financial incentives for surviving family members, finding that 29.6% of respondents would be willing to donate if the government introduced policies that rewarded their families posthumously for their contributions. However, 69% of respondents indicated they would not donate even with incentives provided. The insignificant moderating effect of cash incentives suggests that cash compensation is not viewed as ethical, as organ donation is primarily based on moral considerations [82].
The results indicate that financial incentives are ineffective in increasing altruism to boost organ donation rates. Altruism increases primarily due to the willingness to donate [82]. Consequently, Rasiah et al. [82] emphasize the need for government intervention in the donation system to foster altruism through awareness campaigns [51,77], the establishment of transparent organ transplantation procedures, and the promotion of close interactions among health authorities, nurses, and doctors, along with the provision of an independent donor advocacy service. This service would provide donors with proper advice and management throughout the organ donation process [45,62]. Health authorities and hospital consultants should actively engage in building public trust to encourage potential donors [45], including the involvement of clinical physicians and paramedical staff in the organ donation process, following the Spanish model [62]. When the public is confident that the transplantation process is ethical and equitable, it is more likely that individuals will be motivated by philanthropy to become donors. It is important to note that one of the main reasons for the low donation rate in Malaysia is the public’s distrust in the government's ability to manage organ procurement and medical procedures effectively, coupled with a lack of medical information on organ donation [13,51].
Despite medical evidence confirming that individuals can live healthily with only one kidney, there remains widespread skepticism about the viability of living donation [45,95]. It is clear that further action is required from the government. Tumin et al. [45] suggest strengthening government policies by coordinating medical procedures, implementing universal healthcare systems, and establishing policies for full reimbursement. They also recommend the creation of donor clinics to enhance donors' access to healthcare, improve insurance policies, and provide financial reimbursements, all of which could help maintain or even improve the quality of life for donors. Other researchers have suggested the development of a centralized transplantation system to streamline services and enhance pretransplant evaluations for both donors and recipients [73]. In Malaysia, only a select few hospitals are designated as transplantation centers. These include Hospital Kuala Lumpur for kidney transplantation, Hospital Tunku Azizah Women and Children Hospital in Kuala Lumpur for pediatric liver transplantation, the National Heart Institute in Kuala Lumpur for heart and lung transplantation, Hospital Sultan Idris Shah in Serdang, Selangor for respiratory and lung transplantation, and Hospital Selayang in Selangor for liver and kidney transplantation [10]. While this centralization in the national capital may seem efficient, it creates logistical challenges for patients residing in other states in the country.
The current organ donation registries and policies in Malaysia require a thorough review and implementation to establish an effective nationwide donation system [43]. This is crucial for building public trust in the government's ability to manage organ procurement efficiently [13]. A significant overhaul of Malaysia's public education system is necessary, including the introduction of a standardized syllabus that incorporates organ donation and transplantation as a mandatory topic within general health education in schools [62,73]. This curriculum should comprehensively address the ethical, medical, and religious aspects of organ donation, emphasizing the altruistic importance of deceased donors in saving lives [62]. The effectiveness of Malaysia's public education system in improving organ donation rates has been critically inadequate [73]. Adopting strategies that have proven successful in other countries, such as Japan, where organ donation and transplantation education is integrated into national school systems, could be beneficial [119]. It is essential for Malaysia to develop a functional registration system that allows easy access for individuals wishing to register as organ donors. The Malaysia National Security Council has already created a digital platform called MySEJAHTERA, initially for coronavirus disease 2019 vaccination records and home surveillance monitoring. As of September 2022, this platform has been handed over to the MOH to facilitate online organ pledging [120]. The NTRC should leverage technological advancements to create an online registration platform. This platform could be linked with the MOH websites, as well as those of public and private hospitals and other government agencies that offer various public services [94]. Additionally, innovative recruitment strategies for organ donors should be considered. These could include integrating organ donation registration with the driver’s license application process [73] or during the application or renewal of passports [94].
Only two surveys have been conducted in Malaysia regarding knowledge of tissue banking. The first, in 1998, aimed to assess public awareness and knowledge about tissue banking. At that time, only two tissue banks existed: one at the Malaysian Nuclear Agency, formerly known as the Malaysian Institute for Nuclear Technology Research in Selangor, and another at Hospital Universiti Sains Malaysia in Kelantan. Merely 11.6% of respondents were aware of these two tissue banks [30]. Nineteen years later, in 2017, Mohd et al. [66] carried out another study during the 44th Annual General and Scientific Meeting of the Malaysian Orthopaedic Association. This study aimed to measure the level of knowledge about bone banking within the orthopedic community, utilizing questionnaires distributed to orthopedic professionals. By this time, two additional bone banks had been established at Hospital Kuala Lumpur and the University Malaya Medical Centre. Although a high percentage of participants were aware of all the tissue banks in the country, the continuous dissemination of knowledge about bone banking activities—including bone retrieval, processing, sterilization, and storage, as well as professional training on the use of bone grafts for young surgeons—is considered essential. Such efforts are believed to potentially increase bone transplantation activities in the country.
After an extensive search, only one recent article, published in 2021, addresses the significance of forensic investigation in relation to deceased organ donation. Abd Jalil et al. [88] identified an additional obstacle in the effort to increase organ donation rates, specifically the forensic evaluations that often preclude the opportunity to harvest valuable organs. In Malaysia, there are two types of postmortem examinations: the medicolegal postmortem and the clinical postmortem [121]. The authors noted the requirement for next-of-kin consent under Malaysia's opt-in system for organ donation and for clinical postmortems to determine the cause of death. At such a time, the deceased’s next-of-kin faces the difficult decision of either consenting to a complete autopsy or allowing cadaveric organ donations while they are also grieving and possibly preoccupied with funeral arrangements [88]. However, there appears to be a misunderstanding in the discussion about the time required to complete forensic examinations, which implies that the deceased’s organs would no longer be viable for transplantation. In such cases, the deceased would only be suitable for tissue donation. The authors suggested the importance of valuing forensic outcomes alongside the approach to deceased organ donation, aiming for a win-win situation through efficient coordination between relevant agencies.
To our knowledge, this is the first comprehensive scoping review of the organ donation and transplantation system in Malaysia over the past 25 years. Previous review articles have covered extensive topics including the legal framework, religious affairs, governmental policy, ethics, education, knowledge, and the attitudes, perceptions, and beliefs of Malaysians regarding this system. The first living kidney transplant in Malaysia was performed in 1975, followed by the first deceased donation two years later [49,122]. According to the scoping review, research publications related to organ donation and transplantation in Malaysia began in 1996, indicating a 20-year gap in research following the initiation of transplant activities in the country. From 1996 to 2023, there has been an increase in research output, particularly since 2013, resulting in 69 journal articles, five full conference proceedings papers, and three dissertations. In terms of methodology, 60 articles employed surveys, 13 were observational studies, and four were based on expert opinions. Data collection was predominantly conducted through questionnaires, with 56 studies using this method, eight utilizing content analysis, two engaging in focus group discussions, five conducting interviews, five collecting retrospective data, three performing comparative analyses, and one implementing a randomized controlled trial. The general characteristics of the articles included in the scoping review are summarized in Table 4.
The field of organ donation and transplantation faces numerous inquiries that span medical, legal, ethical, and moral dimensions. The breadth of research in these areas has significantly influenced the country's progress and direction in this field. For analytical purposes, these studies have been categorized into past and present groups: articles published before 2020 are considered past, while those from 2020 onwards are deemed present. Historically, there were 54 papers published between 1996 and 2019, compared to 23 papers from 2020 to 2023. This indicates a marked increase in recent publications, reflecting heightened interest in organ donation and transplantation within the country. These studies have effectively addressed various concerns related to organ donation and transplantation, including legislation, governmental policy, and public knowledge, attitudes, perceptions, beliefs, and religious considerations, both historically and currently. Moreover, the research has been disseminated through local and international journals, conference presentations, and graduate dissertations, employing diverse study designs and data collection methods to reach various demographic groups. Despite each study's inherent limitations, such as sample size, which prevents direct generalizations to the Malaysian population, it is clear that the extensive research conducted over the past 25 years has yielded numerous suggestions and recommendations. Nevertheless, the status of organ donation in Malaysia has remained largely unchanged.
According to the International Registry on Organ Donation and Transplantation (IRODaT) [11], the deceased organ donor rate in Malaysia has ranged from 0.2 to 1.0 donors pmp, with an average of 0.514 donors pmp over the past 20 years. The database includes data on organ donation and transplantation performance from 109 countries, as reported by each country's official agency [11]. Table 5 presents the actual deceased organ donor rate in Malaysia from 2001 to 2022, as reported to IRODaT by the NTRC. Despite significant efforts by the Malaysian government to increase deceased organ donation, the rate has not expanded. This scoping review has identified multiple shortcomings in every dimension of Malaysia's organ donation and transplantation system, from governance to technical and social aspects. With all the research findings identified and published, it is perplexing to understand why the organ donation and transplantation system in the country has failed to improve after more than 25 years. It is concerning that these research findings have remained merely as academic publications and have not been translated into effective actions or government policies to enhance the organ donation rate and, ultimately, to make the system successful, progressing from the past to the present and into the future.
To explore the extent of research conducted on organ donation and transplantation in Malaysia over the past quarter-century, we must examine the coverage of studies to assess the country's progress from the past to the present and address the existing knowledge gap. The initial two articles, published in 1996 and 1998, focused on the Human Tissues Act. A decade later, several other articles emerged concerning the legislative framework, specifically proposing reforms or amendments to the Human Tissues Act, which was enacted in 1974. More recently, the 2019 publication discussed optimizing the current legislation and advocated for improvements to Malaysia's existing opt-in system. In summary, research is any formal or informal process undertaken to fill a void in knowledge, build on existing knowledge, or create new knowledge. These studies have underscored the urgent need to bridge the gap between law enforcement and the community through a comprehensive approach. Furthermore, it is clear that from 1996 to 2019, various articles have been published addressing the issue of the legal framework and recommending significant reforms to the Human Tissues Act due to its inadequacies, which contribute to the shortage of organs. These research findings are startling, as no efforts have been made to review or amend the legal framework for 50 years. Given this, relevant authorities and stakeholders have had ample time to conduct feasibility studies and make necessary amendments to the existing law to advance organ donation.
According to Morad and Ismail [49], the new Organ Transplantation Law was drafted in 2013 to define the scope of the proposed law, clarify the definition of a live-related donor, and address the issues of death, including brain death. It also aimed to prohibit organ trading and ensure the fair and transparent allocation of organs. In late 2011, the MOH established a technical working group (TWG) to develop this law, taking into account the sensitivities and viewpoints of various religions in the country throughout the law formulation process [49]. The TWG concluded that an opt-in system would be more appropriate for Malaysia, given the cultural sensitivities and the reluctance of a significant portion of the population to become organ donors. The scope of the Organ Transplantation Act was to encompass all organs and tissues, including cord blood cells, and cover both living and deceased donors. The group anticipated logistical challenges in managing the opt-out declaration process, especially since a large proportion of the population resides in rural areas. Additionally, the level of functional literacy concerning organ transplantation remains low among the population. Although Datuk Seri Dr. Jeyaindran Sinnadurai, the former Deputy Director General of Health Malaysia, announced that the Organ and Tissue Transplantation Bill would be presented in Parliament before the end of 2017 [123], it was disappointing to learn that the proposed law did not materialize even after 10 years. In essence, the proposed law never came to fruition, and the legal framework continues to be governed by the Human Tissue Act, which has been in place since 1974.
Another article, published in 1998, was a survey related to tissue banks in Malaysia. It was not surprising that the authors noted a limited level of knowledge among Malaysians about the first two tissue banks established in the country in 1994. No further studies on tissue banks emerged until 2017, when research focused on the awareness of tissue banking among orthopedic professionals. In contrast, knowledge and attitudes among healthcare professionals regarding organ donation and transplantation were explored as early as 2000, with publications continuing sporadically through 2023. These publications specifically addressed the technical concept of brain death, revealing a significant lack of understanding and certification of brain death among medical professionals. The study explicitly stated that well-informed healthcare professionals, along with a comprehensive, structured program for brain death and deceased organ transplantation, could help address the imbalance between the supply and demand for cadaveric organs from brain-dead patients [31]. Organ transplantation has significantly enhanced patient survival and quality of life. It has not only increased life expectancy but also provided economic benefits [62]. Despite the abundant scientific evidence supporting the advantages of organ transplantation, healthcare professionals themselves still require more convincing and education. Knowledge about organ donation and transplantation is a critical factor that can contribute to the success of organ donation initiatives. Paramedics, including nurses who are integral to the healthcare team, must possess adequate knowledge about organ donation as they play a crucial role in the organ acquisition process [85].
Between 2010 and 2020, there were only a few publications advocating for improvements in governmental policies and directions in response to the persistent, prolonged organ shortage in the country. Despite various efforts, Malaysia continues to have one of the lowest organ donation rates globally. This indicates that multiple initiatives, including the establishment of proper governmental structures like the NTRC to lead organ donation programs, may have been implemented but were not executed effectively, leading to their failure. Unsuccessful campaigns that targeted inappropriate population groups, as highlighted in the studies, contributed to the lack of awareness and understanding of organ donation and transplantation. Consequently, numerous innovative recommendations were made, including reforms to the universal healthcare systems and the national education syllabus. These reforms aim to improve the quality of life for donors and ensure that young Malaysians acquire sufficient knowledge about organ donation early in their education, thereby helping to overcome the barrier of low organ donation rates in the country.
In 2021, only one study focused on organ donation from a medicolegal or judicial perspective was published. The findings indicate a general lack of knowledge concerning forensic examinations and organ donations. Within the medicolegal context, there are two classifications of death: brought-in-dead cases and deaths occurring in hospital settings, including wards and the emergency department [121]. For cases processed by the Department of Forensic Medicine, the deceased are only eligible for tissue donation. This procedure can be carried out in the mortuary or in an operating room, provided that consent is obtained from both the next-of-kin and either the police investigation officer or the magistrate. In instances involving deaths in the wards or emergency department, timely identification and referral of potential donors to a transplant coordinator can lead to successful organ donations. Improved forensic decision-making and strategies could enhance the availability of organs for transplantation. In other countries, the impact of organ donations on autopsy findings and court proceedings has been minimal. The evidence suggests that coronial findings or judicial outcomes are not significantly altered in cases where organ harvesting does not substantially change the forensic results [124].
From 1996 to 2023, most publications focused on research related to sociodemographic profiles, attitudes, perceptions, religious beliefs, cultural traditions, and ethical issues surrounding organ donation and transplantation. These studies encompassed a variety of study populations, including the general public, parents, accompanying relatives, patients, university students and staff, religious leaders, academicians, and key informants or experts' groups, which included healthcare professionals. The majority of these studies were conducted in the urban areas of Malaysia, primarily in the federal territories of Kuala Lumpur and the towns in the state of Selangor, also known as Greater Kuala Lumpur. Only a few studies took place outside Greater Kuala Lumpur, with one each in Kedah, Perak, Pahang, Negeri Sembilan, Melaka, Johor, Terengganu, Sabah, and Sarawak. Although these findings do not represent the entire Malaysian population, it is clear that the majority, particularly Malays, remain very conservative and skeptical about organ donation and transplantation. In Malaysia, where most of the population is Muslim, convincing people to become organ donors continues to be a significant challenge. Despite a strong understanding of organ donation from an Islamic perspective, the percentage of Muslims willing to donate their organs remains low due to religious beliefs and perceptual barriers. Fig. 2 provides a summary of the timeline of the main relevant events in organ donation and transplantation in Malaysia.
There is a pressing need for the transplant community to move beyond the traditional paradigm, as the findings from the studies included in this scoping review may prompt a policy change for the better. Many authors have conducted comparative studies using various models of the organ donation system from around the world to identify solutions for Malaysia. The models most frequently referenced were from Singapore [49], Australia [57], Spain [42], the United Kingdom [8], and the United States [43,82]. Based on the findings and recommendations, some authors support the adoption of an opt-out system, while others prefer to maintain the current opt-in or informed consent system. However, there remains a significant misunderstanding and lack of full comprehension regarding the opt-out legislation, particularly under the Spanish presumed consent law. The presumed consent law, first enacted in Spain and regulated under the Transplantation Law 30/1979 (Ley de Trasplantes), was developed by Royal Decree 2070/1999 [125]. Established in October 1979, this law has been amended several times to meet the evolving needs and circumstances in the field of organ donation and transplantation. Under presumed consent legislation, a deceased individual is considered a potential donor unless there was explicit opposition to donation before death. This approach has had a positive and significant impact on organ donation rates over the past 10 years, as evidenced by a comparison of 22 countries [125].
The theoretically presumed consent arrangements are, in practice, only implemented with family consent [126], which may lead to misconceptions. It simply means that no donation will occur without the family's approval, even though it is regulated under this law. It is important to note that the presumed consent law allows for the initiation of early organ preservation techniques without family consent, which leads to improved outcomes for the transplanted organ. As a result, the incidence of primary nonfunction and delayed graft function can be reduced, subsequently increasing graft survival in cases of uncontrolled donation after circulatory death (u-DCD). This is comparable to outcomes in donation after brain death (DBD) and controlled DCD (c-DCD). Currently, in Malaysia, both u-DCD and c-DCD are not practiced, with the focus solely on DBD patients as the only source of organ supply. Consequently, if Malaysia were to adopt this legislation, there would be no change in the process of obtaining consent from family members. However, it would facilitate the development of a u-DCD program, significantly expanding the pool of potential deceased organ donors. The establishment of a new DCD program in the country would undoubtedly offer hope to many patients facing terminal and chronic illnesses, under the framework of the presumed consent or opt-out system in Malaysia.
Comparatively, as presented in several previous studies in this scoping review, it was apparent that the majority of healthcare professionals in the country lack knowledge about the concept of brain death, the withdrawal and discontinuation of life support in brain-dead patients, and the early identification and referral of these patients. While aiming to enhance the organ supply through DBD donors, Malaysia faces complex social and religious barriers that foster misconceptions and erroneous beliefs about organ donation and transplantation, despite their religious legitimacy. A nationally coordinated mechanism must be established to ensure the effective identification of potential donors and recipients [33,43]. At this juncture, two elements of the Spanish model could be adopted to enhance the success of organ donation in Malaysia. The first is the appointment of a "key donating person," who develops donor detection programs within individual hospitals and operates independently from the transplant team, with clearly defined roles and responsibilities that include managing donor identification and auditing [126]. The second feature of the Spanish model focuses on how the Spanish Organ Donor Service coordinates the national effort to communicate not only with the public and healthcare professionals but also with the media, aiming to maximize positive coverage and minimize negative publicity. Their 24-hour media hotline ensures that information is fair, accurate, and readily available to journalists, and this is complemented by periodic meetings to foster a more positive and informed relationship with the media [126].
Indeed, the role of "key donating person" is equivalent to that of the transplant coordinator in major hospitals, while the Spanish Organ Donor Service is similar to the NTRC. Malaysia has been gradually improving its framework in this area for decades. However, there is a need to specifically train coordinator doctors who will take full responsibility for the process. By adopting the Spanish model [126], the aim is to significantly enhance the detection of potential donors and increase consent rates through professional medical education [127]. Subsequently, it is crucial to reevaluate and enhance the current national program and policies on organ donation. This will facilitate effective public education, thereby boosting public awareness and acceptance of organ donation and addressing Malaysia's organ shortage. Additionally, forensic institutes and the local judicial system should establish guidelines to improve communication between agencies and standardize practices. This will ensure that the rate of cadaveric organ donations is not adversely affected by forensic requirements, as recommended by Delannoy et al. [128]. Regarding incentives for living organ donors and the potential for organ donation from death row prisoners, these should be considered only after enhancing the overall system approach. Further research is necessary to explore meaningful interventions through technologies such as artificial intelligence in organ matching and bioprinting for organ production, aiming to provide sustainable organ supplies.
The Sustainable Development Goals (SDGs), also known as the Global Goals, were adopted by the United Nations in 2015 as a universal call to action to end poverty, protect the planet, and ensure that by 2030 all people enjoy peace and prosperity [129]. Comprising 17 integrated goals, the SDGs aim to balance social, economic, and environmental sustainability. Many of these goals intersect with organ donation and transplantation, providing a framework for strategic national transformation. Additionally, the Sustainable Development Report of 2019 proposed that the SDGs could be more effectively implemented through six SDG transformations, rather than focusing solely on individual goals [130]. One such transformation, encompassing the block of education, gender, and inequality, includes SDGs 1, 4, 5, and 10. This transformation unites ministries responsible for education, technology, social development, and family affairs, thereby enhancing early childhood development, education, and social protection throughout the lifespan. Specifically, this transformation aims to improve kidney health by ensuring a healthier start in life and enhancing equity and access to health promotion and care [131].
Education (SDG 4) is also the key for health literacy, which empowers individuals to make informed health choices [132]. It is also essential for developing a skilled future workforce. Low health literacy is prevalent among patients with kidney disease and is linked to treatment failure and adverse health outcomes, including death [132]. This issue is indirectly related to poverty (SDG 1). Successful organ transplantation can prevent families from falling into poverty due to the costs associated with chronic illnesses and long-term medical care. It also helps reduce the economic burden on families and the healthcare system. Gender equality (SDG 5) not only improves the health of women and children but also promotes economic growth and social change [129]. It addresses disparities in access to organ transplantation services, thereby closing the inequality gap (SDG 10) and emphasizing efforts to reduce inequalities in organ allocation and distribution across different socioeconomic and demographic groups. The block of health, well-being, and demography, encompassing SDGs 3, 8, and 17, falls largely under the MOH but requires reliable data collection and reporting. Kidney health should benefit from health promotion, the identification of risk factors and disease burdens, the achievement of universal health coverage, and the delivery of quality healthcare [131].
Correspondingly, organ donation and transplantation directly improve health and well-being by saving lives and optimizing health outcomes, particularly addressing prevalent health issues like chronic kidney disease in Malaysia, in alignment with SDG 3. Additionally, strengthening partnerships (SDG 17) with government agencies, NGOs, and international collaborators can enhance the promotion of organ donation and transplantation, aiming to develop a sustainable and efficient system in Malaysia. This initiative can also contribute to economic growth (SDG 8) by maintaining a healthy, productive population and generating employment opportunities in healthcare and related sectors. Lastly, SDG 9, which focuses on industry, innovation, and infrastructure, is crucial for advancing technologies in organ preservation, transportation, and transplantation, thereby improving the organ donation process and outcomes for recipients. In this context, it is necessary to address the critical shortage of ICU beds across major hospitals to facilitate the identification of potential brain death donors. Similarly, upgrading and benchmarking the country’s tissue bank facilities against those in successful nations is timely.
Linking all SDGs with health is logical from both individual and societal perspectives, particularly in striving for justice and reducing inequities in access to healthcare and equal opportunities for organ transplantation [131]. Improvements in Malaysia's organ donation and transplantation system will not occur overnight but should start immediately with robust governance and a legal framework. Priorities must be set transparently, and policies implemented with a focus on quality and equity as guiding principles. Within the health system, financing needs to be sustainable. Healthcare workers should be educated and supported to perform their duties competently and without undue distress. Additionally, appropriate infrastructure, medicines, and technologies must be accessible at every level of healthcare. The monitoring and evaluation paradigm promoted by the SDGs should enhance accountability and hasten progress in terms of system efficiency, effective coverage of care, and financial risk protection [131]. The key to developing an optimal model of organ donation and transplantation system for Malaysia fundamentally lies in immediate interventions by the government and relevant stakeholders and authorities. This scoping review has identified all the critical measures that require urgent attention and implementation to establish a resilient model for organ donation and transplantation in the country, guiding future efforts.
Organ donation is a noble practice and is not new to Malaysia, where it has been an accepted treatment method [95]. For many in the country, the marvels of modern medicine, including organ transplantation, are seen as part of a cultural revolution that aligns with society's values, beliefs, and norms [126].
The scoping review of the literature highlights the evolution of organ donation and transplantation and improves our understanding of how these practices have developed and improved over the years. Our study has been particularly valuable because it has raised questions that will guide future research. We have findings to share with stakeholders, including policymakers and healthcare providers, to help ensure that no potential organ donors are overlooked or fail to be referred to the system. Despite significant progress over the years, ongoing efforts are essential to ensure continued advancement and to address any discrepancies. The scoping review identified gaps in the literature and underscored the need for decisive action at the highest levels. Malaysia requires a comprehensive approach that includes overhauls in medical practice, legislation, governance, and policymaking, with a particular focus on education. Implementing presumed consent for organ donations in Malaysia will benefit recipients, medical institutions, donors, and all those directly or indirectly involved with organ donations. This includes reducing the waiting time for organ donors, ensuring an adequate supply of organs, and indirectly increasing life expectancies, all of which support the SDGs.
Supplementary materials can be found via https://doi.org/10.4285/ctr.24.0020.
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Table 1
Table 2
Table 3
Table 4
Characteristic | n=77 (%) |
---|---|
Publication year | |
<2000 | 3 (3.90) |
2000–2004 | 2 (2.60) |
2005–2009 | 1 (1.30) |
2010–2014 | 22 (28.57) |
2015–2019 | 26 (33.77) |
2020–2023 | 23 (29.87) |
Publication type | |
Journal article | 69 (89.61) |
Conference proceedings with full paper | 5 (6.49) |
Thesis dissertation | 3 (3.90) |
Study design | |
Observational | 13 (16.88) |
Descriptive analysis (surveys) | 60 (77.92) |
Expert opinion | 4 (5.19) |
Methodologya) | |
Questionnaire | 56 (72.73) |
Content/document analysis | 8 (10.39) |
Focus group discussion | 2 (2.60) |
Interview/in-depth interview | 5 (6.49) |
Retrospective data collection | 5 (6.49) |
Comparative analysis | 3 (3.90) |
Randomized controlled trial | 1 (1.30) |