When Minors Become Donors: Ethical and Legal Gaps in Malaysian Paediatric STEM Cell Transplantation

When Minors Become Donors: Ethical and Legal Gaps in Malaysian Paediatric STEM Cell Transplantation | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article When Minors Become Donors: Ethical and Legal Gaps in Malaysian Paediatric STEM Cell Transplantation Sharifa Binti Muhammad Zahabar, DR MOHAMMAD FIRDAUS BIN ABDUL AZIZ This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9613459/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract The use of minor siblings as haematopoietic stem cell (HSC) donors raises profound ethical and legal concerns, particularly in jurisdictions where regulatory guidance is absent. In Malaysia, no specific statutory framework governs the assessment, consent process, or protection of minor donors in paediatric transplantation. This article examines how healthcare professionals navigate this normative vacuum. Drawing on qualitative interviews with fifteen transplant clinicians, nurses, and coordinators at a Malaysian public university hospital, the study identifies five recurring themes: biologically driven donor selection, informal and inconsistent assent practices, constrained voluntariness within family structures, institutional reliance on discretion, and professional support for regulatory reform. While participants expressed ethical awareness, donor protection mechanisms were found to be uneven and largely undocumented. Using a child-rights-based bioethical framework grounded in the Convention on the Rights of the Child and relational autonomy theory, the article argues that current practice produces a form of “ethical drift” in which donor welfare becomes secondary to recipient survival. The Malaysian case illustrates how regulatory absence transforms ethical safeguards into discretionary acts rather than enforceable standards. The article concludes that structured national guidance, including mandatory assent protocols and independent donor advocacy, represents not merely policy reform but a moral imperative in paediatric transplantation governance. Medical Ethics Pediatrics minor donors paediatric HSCT informed assent donor advocacy medical ethics 1. Introduction In paediatric haematopoietic stem cell transplantation (HSCT), the use of minor siblings as donors introduces complex legal and ethical considerations. While the procedure may offer curative potential for the recipient child, it imposes significant emotional, psychological, and physical burdens on the minor donor who may have limited capacity to understand, consent to, or decline the procedure. International bioethics discourse continues to debate the legitimacy of involving minors in donation, especially where the risks to the donor are non-therapeutic and the benefits indirect. Central to these debates are questions around voluntariness, informed assent, and institutional responsibility in protecting vulnerable donors. In Malaysia, no statutory or formalised regulatory framework currently governs the selection, consent process, or protection of minor donors in paediatric HSCT. Clinical decisions are instead guided by institutional discretion, professional norms, and familial expectations. This regulatory vacuum creates significant variability in practice, and raises questions about how healthcare professionals navigate consent, risk, and ethical responsibility. While international guidelines such as those from the American Academy of Pediatrics and the World Marrow Donor Association provide useful benchmarks, their applicability within the Malaysian context has not been systematically explored. This article examines how medical practitioners and transplant personnel experience and respond to the ethical and legal ambiguities that arise in minor donor involvement. Grounded in qualitative interviews at a public university hospital in Malaysia, the study situates these experiences within broader ethical, legal, and policy frameworks. The analysis aims to inform future policy development by clarifying practice-based concerns and identifying key areas where institutional and legal reform are most urgently needed. 2. Legal and Ethical Framework for Minor Donors 2.1 International Ethical Principles International bodies have developed detailed ethical frameworks for the protection of minor haematopoietic stem cell (HSC) donors. The World Health Organization 1 underscores the need for child protection mechanisms, including psychosocial support and ethical oversight. Statements from the World Marrow Donor Association (WMDA) and the American Academy of Pediatrics (AAP) emphasise safeguards to reduce conflicts of interest, including donor screening/consent by clinicians not involved in the recipient’s care and assessment by an independent donor advocate 2 . The American Academy of Pediatrics 3 similarly advises that minors should be considered donors only in life-saving contexts, and only when safeguards such as a donor advocate are in place. The UN Convention on the Rights of the Child (CRC), to which Malaysia is a signatory, affirms the right of children to express their views freely (Article 12) 4 and to have their best interests treated as a primary consideration in all decisions affecting them (Article 3) 5 . These instruments form a shared international consensus: that paediatric donation must occur under strict conditions that protect the minor donor’s autonomy, dignity, and welfare. 2.2 Consent, Assent in Legal Theory Legal systems differentiate between consent (provided by legally competent adults) and assent (affirmative agreement from a minor not legally competent to consent). In paediatric medical ethics, both are seen as necessary to ensure that the minor’s perspective is acknowledged. The doctrine of best interest further mandates that any medical intervention involving a minor must serve their physical, emotional, and psychological welfare. In the context of sibling donation, however, the donor receives no direct medical benefit. This creates an ethical tension between the urgency of saving a recipient sibling and the obligation to protect the minor donor from undue harm. Without mechanisms for verifying voluntariness, there is a risk that family loyalty, parental pressure, or institutional urgency may override the donor’s actual wishes. 2.3 Malaysian Legal and Institutional Landscape Malaysia lacks a statutory framework governing paediatric stem cell donation. The Human Tissues Act 1974 does not address minors or stem cell transplantation specifically. In practice, parental consent is often accepted as sufficient, with no formal requirement for minor’s assent or independent donor advocacy. Institutional practices vary widely. Some hospitals involve multidisciplinary teams or psychological assessments, while others rely solely on the attending physician’s judgment. There is no nationwide ethical protocol for donor assessment, nor is there a legal obligation to monitor donor outcomes post-procedure. Although Malaysia ratified the CRC in 1995, its principles have not been fully operationalised in clinical transplant settings. The resulting legal vacuum leaves minor donors unprotected and healthcare professionals without formal guidance. 2.4 Comparative Approaches to Minor Donor Regulation While Malaysia lacks a regulatory framework specific to minor stem cell donors, some jurisdictions have implemented more structured safeguards. These serve as useful reference points for understanding how legal systems can respond to the ethical complexities of paediatric donation. In the United Kingdom, the Human Tissue Authority (HTA) plays a central role in regulating haematopoietic stem cell donations involving minors. Where a minor is proposed as a donor, the process requires independent assessment to ensure that the minor’s participation is voluntary and in their best interests. An independent assessor, not involved in the medical team or family, is appointed to interview the minor donor separately. This ensures that the minor understands the nature of the procedure (in an age-appropriate way), and that no coercion or undue influence is present. Additionally, UK practice distinguishes clearly between consent and assent, requiring both parental consent and the minor’s affirmative willingness to participate, where possible. These procedural safeguards reflect a broader commitment to minor autonomy and welfare, as well as legal accountability for medical practitioners and institutions. They contrast sharply with Malaysia’s current approach, where no equivalent mechanisms such as donor advocacy, mandated assent, or independent review are formally required. The UK framework offers a practical model for how regulatory oversight can reinforce ethical standards in the context of paediatric stem cell transplantation. 2.5 Normative Framework: Child Rights, Relational Autonomy, and Structural Vulnerability This study is grounded in a child-rights-based bioethical framework informed by three interlocking normative principles: ( 1 ) the best interests principle, ( 2 ) participatory rights of the minor, and ( 3 ) relational understandings of autonomy within contexts of vulnerability. First, Article 3 of the United Nations Convention on the Rights of the Child (CRC) establishes that the best interests of the minor must be a primary consideration in all decisions affecting them. In the context of sibling stem cell donation, this principle requires independent assessment of the minor donor welfare, distinct from the clinical interests of the recipient sibling. Where the donor derives no direct medical benefit, the ethical justification must rest on demonstrable minimal risk and the safeguarding of psychological and emotional wellbeing. Second, Article 12 of the CRC affirms the child’s right to express views freely in matters affecting them, with due weight given according to age and maturity. Assent, therefore, is not merely a symbolic courtesy but a procedural manifestation of participatory rights. Failure to meaningfully incorporate the minor’s perspective risks reducing them to an instrument of familial or medical necessity. Third, this study draws upon relational autonomy theory, which recognises that decision-making occurs within networks of dependency, cultural expectations, and familial obligations. In collectivist contexts such as Malaysia, family solidarity may shape moral reasoning in ways that complicate liberal individualist models of autonomy. However, relational autonomy does not negate the need for voluntariness; rather, it demands heightened vigilance against subtle coercion embedded within family structures. Finally, vulnerability theory provides a structural lens through which to understand the minor donor’s position. Minor donors are uniquely vulnerable, whereby they are legally dependent, emotionally embedded in family systems, and exposed to non-therapeutic medical risk. In the absence of institutional safeguards, this vulnerability is not merely personal but systemic. Together, these normative principles provide the evaluative foundation for assessing whether current Malaysian practices adequately protect minor donors. The empirical findings are interpreted against these ethical benchmarks. 3. Methodology: Ethical Decision-Making in Practice This study adopted a qualitative approach to explore how healthcare professionals navigate ethical uncertainties in the selection of minor haematopoietic stem cell donors within Malaysia’s public healthcare system. The focus was on how ethical principles such as voluntariness, informed consent, and the best interests of the minor are operationalised or compromised in clinical practice, especially in the absence of specific legal or institutional frameworks. The research question was grounded in a normative concern: whether and how current practices adequately protect the rights of minor donors. Data were collected through in-depth, semi-structured interviews with fifteen participants directly involved in paediatric HSCT. These included healthcare practitioners transplant coordinators, and nursing personnel based in a leading Malaysian transplant centre. Participants were selected through purposive sampling to ensure diverse professional perspectives across the transplant process. Interviews were conducted in person and guided by a thematically structured interview protocol, focusing on clinical decision-making, consent procedures, familial dynamics, and views on regulatory needs. Interviews were audio-recorded with consent, transcribed verbatim, and subjected to thematic analysis. Quotations used in this article are drawn from the interview transcripts and have been lightly edited for readability where necessary, without altering their substantive meaning. Coding was conducted using both inductive and deductive methods, allowing patterns to emerge while also tracing ethical themes drawn from existing literature. Thematic saturation was reached after nine interviews, with the remaining used to verify recurring findings. The analysis was guided by a bioethical lens, examining how ethical reasoning was reflected or absent in the accounts of those making or supporting donor-related decisions. To ensure rigour, reflexive memos were maintained during coding, and emerging interpretations were discussed with a supervisory panel to avoid bias. Participants’ anonymity was preserved, and all identifiable information was removed or anonymised in reporting. Ethical approval for this research was obtained from the university’s research ethics committee prior to data collection. This qualitative methodology enabled the integration of empirical insight with normative analysis, providing a grounded basis from which to assess both the ethical adequacy of current practices and the need for legal reform. 4. Findings: Stakeholder Narratives on Ethical Dilemmas This section presents the core themes that emerged from interviews with healthcare professionals involved in paediatric haematopoietic stem cell transplantation (HSCT) at a public university hospital in Malaysia. Participants were asked to reflect on how donor selection decisions are made in the absence of specific legal frameworks, and how ethical principles such as voluntariness, informed consent, child protection, and best interests are navigated in everyday clinical practice. The findings are grouped into five interrelated themes: Clinical Decision-Making and Donor Selection Understanding Consent and Assent Voluntariness and Family Pressure Institutional Discretion and Absence of Guidelines Stakeholder Perspectives on Legal Reform Across these themes, participants described a system in which ethical reasoning is shaped less by formal protocols and more by family dynamics, clinical urgency, and institutional norms. While many medical practitioners demonstrated a clear awareness of ethical obligations toward donor children, this awareness was not always supported by structured safeguards or consistent procedures. The findings highlight areas where ethical ambiguity persists, and where clearer legal and institutional guidance is needed to ensure the protection of minor donors. 4.1 Clinical Decision-Making and Donor Selection In the absence of a dedicated legal framework in Malaysia, donor selection for paediatric haematopoietic stem cell transplantation (HSCT) is largely driven by clinical judgment and institutional norms. Participants reported that HLA compatibility remains the central criterion, but decisions are often shaped by urgency and familial expectations. Minor siblings are routinely considered when no adult match is available, and their eligibility is primarily assessed through clinical tests rather than psychosocial or ethical review. Most participants acknowledged that the decision to proceed with a sibling donor is typically made by parents in consultation with medical professionals. The role of medical practitioner is often limited to advising on compatibility and procedural risk. As one haematologist observed: “It’s the parents who decide, not the minor. We look at HLA match and blood work. If everything fits, we proceed.” (Participant 3, Haematologist) There is no consistent use of formal criteria to determine whether the minor donor understands the procedure or is psychologically prepared. Several participants highlighted the lack of multidisciplinary assessment or minor-focused evaluation. A nurse commented: “We don’t really have a checklist for donors. It depends on the consultant, and sometimes the urgency pushes things forward.” (Participant 6, Transplant Nurse) While some institutions consult child psychologists in complex cases, this appears to be the exception rather than the norm. Most participants confirmed that the absence of national guidelines leaves decisions to the discretion of the clinical team. This discretion is influenced not only by clinical factors but also by the emotional pressure families face. One medical practitioner noted: “There is this silent assumption that the sibling will donate if matched. No one really questions it, unless the parents raise concerns.” (Participant 1, Medical Officer) The findings suggest that donor selection processes are medically competent but ethically inconsistent. The focus on biological compatibility, while clinically necessary, often overshadows the minor donor’s capacity, willingness, or emotional readiness. In the absence of binding standards, ethical safeguards are applied variably, if at all. 4.2 Understanding Consent and Assent Although informed consent is a standard part of clinical procedures, the process involving minor donors in paediatric HSCT remains limited in both structure and depth. Participants consistently identified the legal authority of parents as central to decision-making, while the minor donor's voice was often treated as secondary or symbolic. The concept of assent, the minor’s affirmative agreement was widely acknowledged in theory but rarely implemented in practice. Medical practitioners generally agreed that consent discussions occur primarily with parents. While most staff described efforts to inform the minor donor about the procedure, these efforts were largely informal and varied significantly by age and maturity. One medical officer noted: “We explain it in simple terms, but it’s more to reassure than to ask permission. The parents’ consent is what we rely on.” (Participant 5, Medical Officer) This pattern reflects a broader tendency to interpret the minor’s involvement as a matter of comfort rather than agency. Several participants indicated that when a minor appeared distressed or hesitant, the family’s wishes often took precedence. A nurse commented: “Sometimes the child is scared, but the parents are convinced this is the only hope. It’s difficult to push back.” (Participant 9, Transplant Nurse) No participants referred to using formal assent documents, and there was no indication that institutional policy required a separate process for engaging minor donors in a meaningful or developmentally appropriate way. Some interviewees acknowledged this gap, particularly in cases involving older children or adolescents. “If the donor is a teenager, I think we should have more than just a conversation. But currently, we don't have guidelines for that.” (Participant 2, Haematologist) This absence of structure leaves professionals to navigate the issue at their own discretion, with significant variation in how children’s views are considered. While some medical practitioners reported seeking private conversations with adolescent donors, others admitted that they would proceed even if the minor expressed reluctance, provided parental consent was in place. The findings suggest that the lack of formalised assent processes in paediatric HSCT practice places minor donors in a vulnerable position. Without institutional protocols or legal standards requiring their participation in decision-making, children’s rights under international norms particularly Article 12 of the CRC are only partially observed. Assent, when obtained, is informal, undocumented, and ultimately subordinate to parental authority. 4.3 Voluntariness and Family Pressure The concept of voluntariness is central to ethical decision-making in paediatric transplantation, yet participants described a context in which minor donors can rarely make a free and uncoerced choice. The family dynamic, urgency of the recipient’s condition, and cultural expectations of obedience all converge to create implicit pressure on the minor donor to comply. Several medical practitioners acknowledged that while formal coercion does not occur, minor donors often internalise a sense of duty that makes refusal practically unthinkable. As one medical officer explained: “Even if the child doesn’t want to, they often won’t say it out loud. The family is under stress, and the child feels responsible.” (Participant 7, Medical Officer) This emotional pressure is compounded by the lack of external support systems. Without a donor advocate or independent assessor, there is no mechanism to evaluate whether the donor’s agreement reflects genuine willingness or silent compliance. A transplant nurse noted: “I’ve seen cases where the child looks unsure, but the parents speak on their behalf. We don’t usually intervene unless something extreme happens.” (Participant 10, Nurse) Participants also reflected on the cultural backdrop in which family authority tends to override individual preference. In many cases, the sibling donor is treated as an extension of parental will, especially in contexts where the transplant is seen as the only hope of saving the recipient child. As one haematologist observed: “It’s a moral obligation in the eyes of the family. Saying no would be seen as selfish, even if the child is scared.” (Participant 3, Haematologist) The absence of formal tools to assess voluntariness means that medical practitioners rely heavily on observational judgment and familial reassurance. This creates ethical uncertainty, particularly in situations where the minor donor shows signs of hesitation or distress. The clinicians interviewed expressed concern over this grey area but admitted that institutional support for addressing it remains minimal. These findings suggest that while the rhetoric of voluntariness is present, the reality for minor donors is often shaped by silent pressures and unspoken expectations. Without structured mechanisms to safeguard autonomy such as donor advocates, independent assent interviews, or psychological evaluations the minor’s decision to donate may be less voluntary than it appears. 4.4 Institutional Discretion and Absence of Guidelines Participants consistently noted the absence of formal legal or institutional guidelines governing the use of minor donors in haematopoietic stem cell transplantation (HSCT) in Malaysia. As a result, practices vary significantly across cases, with medical practitioners and hospital ethics boards exercising wide discretion in managing donor-related decisions. Some medical practitioners expressed concern about the reliance on internal judgment in ethically complex scenarios. Without national-level protocols, there is no uniform approach to assess donor suitability beyond clinical compatibility. As one haematologist commented: “There’s no policy, no checklist. We rely on precedent and what feels ethically sound in that moment.” (Participant 4, Consultant Haematologist) This discretion was seen by some participants as necessary, particularly in a context where HSCT is a time-sensitive, high-stakes procedure. Yet others acknowledged that such flexibility risks inconsistency and ethical oversight. A medical officer observed: “Every team has its own way. Some involve psychologists, some don’t. There’s no requirement. It depends on who’s in charge.” (Participant 6, Medical Officer) The absence of standard operating procedures extends to areas such as assent documentation, donor risk assessment, and follow-up care. One transplant coordinator noted that even within the same institution, different consultants might take different approaches when assessing a minor's emotional readiness to donate. In high-pressure cases, institutional discretion tends to lean toward enabling transplantation rather than safeguarding the donor. Several participants reflected that in life-threatening situations for the recipient, the donor’s welfare becomes a secondary concern. A transplant nurse shared: “When the patient’s condition is deteriorating, everyone is focused on saving them. The donor’s experience is not always at the centre.” (Participant 9, Transplant Nurse) This theme highlights a structural gap in the current system. In the absence of national guidelines or institutional protocols, medical practitioners must rely on their own judgment when making ethically sensitive decisions. This places uneven responsibility on individual professionals and creates variability in how cases are handled. As a result, some donor children may receive more careful assessment and protection than others, depending not on policy, but on who is making the decision. 4.5 Stakeholder Perspectives on Legal Reform Several participants expressed concern over the absence of legislation or regulatory guidance specific to minor donors in Malaysia. While acknowledging the sensitivity of regulating family decisions in healthcare, many felt that the current reliance on institutional discretion is insufficient to ensure consistent and ethical practices across cases. One clinician noted that although the clinical community operates with good intentions, this alone is not enough to safeguard children’s rights: “ We’re doing our best, but we’re making case-by-case judgments. There should be something clearer, something national to guide us.” (Participant 2, Haematologist) The need for clear legal standards was particularly emphasised in relation to consent, voluntariness, and the role of the minor donor. Several interviewees suggested that a regulatory framework should establish a minimum age for assent, require documentation of the donor’s understanding, and mandate psychological assessments in all sibling donor cases. A transplant nurse reflected: “It would help if we had a checklist or policy to follow especially with kids. Right now, it’s all very informal.” (Participant 8, Nurse) Some participants proposed the adoption of a donor advocate model, similar to those used in other jurisdictions, where an independent party ensures that the minor donor’s interests are represented throughout the process. Others advocated for ethics committee review as a standard step before proceeding with paediatric donations. There was general agreement that reform should not be overly rigid but rather support clinical practice by offering clear ethical boundaries and documentation requirements. One medical officer summarised this view: “We don’t need a law that tells us everything, but we do need something to make sure every child is treated fairly no matter who the doctor is or which hospital.” (Participant 5, Medical Officer) These reflections indicate strong professional support for a structured framework whether legal or policy-based that would reduce variability and strengthen minor protection without undermining the role of clinical expertise or parental care. 5. Discussion This study explored how clinicians and healthcare professionals in a Malaysian transplant centre navigate the ethical challenges of involving minor siblings as haematopoietic stem cell donors. The findings revealed a system that functions largely in the absence of legal frameworks or institutional protocols, relying instead on clinical discretion and familial negotiation. While participants generally demonstrated ethical awareness and good intentions, the study identified significant variability in practice, with few structured safeguards to ensure voluntariness, informed consent, or the donor child’s welfare. Five core themes emerged from the interviews. Donor selection was primarily driven by clinical urgency and HLA compatibility, often with limited psychosocial assessment. The concept of assent, though acknowledged, was inconsistently implemented and rarely documented. Voluntariness was found to be deeply shaped by family dynamics and cultural expectations, with donor children often assuming a silent obligation to comply. Institutional discretion filled the void left by legal and policy gaps, leading to variations in how children’s rights and protections were applied. Finally, many participants expressed a clear need for structured guidance, favouring national-level standards that could support both ethical practice and clinical decision-making. These findings suggest that while paediatric HSCT in Malaysia operates within a competent clinical system, it lacks the ethical infrastructure needed to consistently uphold the rights and welfare of minor donors. The reliance on discretion, though practical, risks producing inconsistent protections for children depending on the institution, the medical practitioners, or the urgency of the case. 5.1 Interpreting the findings: ethics in a regulatory vacuum This study examined how healthcare professionals navigate the ethical complexities of involving minor siblings as haematopoietic stem cell (HSC) donors within a Malaysian transplant centre operating in the absence of clear statutory or institutional guidance. The findings reveal a clinical environment characterised by professional commitment and ethical awareness, yet structured by regulatory absence and institutional discretion. In such circumstances, ethical safeguards are often applied informally and unevenly, relying heavily on individual practitioners’ judgment rather than systematic procedures. Across the five themes identified in the findings, several patterns emerge. Donor selection is driven primarily by clinical compatibility and the urgency of recipient treatment. The participation of the minor donor in decision-making remains limited, with assent practices largely informal and undocumented. Voluntariness is shaped by powerful family dynamics, where the moral imperative to save a sibling may override the minor donor’s ability to express reluctance. Finally, participants acknowledged the lack of formal protocols governing donor assessment, psychosocial evaluation, and follow-up care. These patterns illustrate how ethical reasoning within clinical practice often develops under conditions of uncertainty. In the absence of structured governance, practitioners must balance competing moral obligations: the urgency to save the recipient child, the duty to protect the minor donor, and respect for parental authority. While such discretion may be unavoidable in time-sensitive medical contexts, reliance on informal judgment risks producing uneven standards of protection for minor donors. Interpreting these findings through the normative framework outlined earlier child rights, relational autonomy, and structural vulnerability, reveals deeper ethical concerns within the current system. 5.2 Biologically driven donor selection The principle that the best interests of the minor should be a primary consideration is widely recognised in both medical ethics and international human rights law. As highlighted earlier, Article 3 of the Convention on the Rights of the Child (CRC) establishes that all decisions affecting children must prioritise their welfare. In the context of sibling stem cell donation, this principle requires careful evaluation of the minor donor’s physical, emotional, and psychological wellbeing. The empirical findings suggest that while clinicians are attentive to clinical safety, broader considerations of donor welfare are not systematically assessed. Donor eligibility is primarily determined through biological compatibility and procedural risk, with limited attention to psychosocial readiness or long-term emotional impact. Several participants indicated that psychological assessments are only occasionally conducted and are not embedded in standard practice. This pattern reflects a structural imbalance inherent in sibling transplantation. The medical urgency associated with treating the recipient child can shift institutional focus away from the minor donor’s independent interests. In such circumstances, the best interests of the minor donor risk becoming implicitly secondary to the therapeutic goals of the transplant procedure. International ethical guidelines attempt to address this tension by requiring additional safeguards when minors are involved as donors. These include psychosocial evaluation, independent donor advocacy, and verification that the risks to the donor are minimal and proportionate. The absence of comparable safeguards within the Malaysian context means that the best interests principle is interpreted largely through clinical judgment rather than structured assessment. Importantly, the empirical findings do not suggest negligence or indifference on the part of clinicians. Rather, they highlight how regulatory gaps can transform ethical obligations into discretionary practices. Without formal procedures to evaluate donor welfare independently of recipient need, the protection of minor donors becomes contingent on individual professional judgment rather than institutional standards. 5.3 Informal and inconsistent assent practices A second key implication concerns the participatory rights of children in medical decision-making. Article 12 of the CRC affirms that children capable of forming views have the right to express those views in matters affecting them, and that those views should be given due weight according to age and maturity. Within medical ethics, this principle is typically operationalised through processes of informed consent. In the case of minors, who may not possess full legal capacity to consent, this participation is recognised through the practice of assent, whereby the minor’s agreement is sought alongside parental consent. The findings indicate that assent in Malaysian paediatric HSCT practice is largely informal. Clinicians reported explaining procedures to donors in age-appropriate ways, but these conversations were typically framed as reassurance rather than genuine decision-making opportunities. No participants reported using formal assent documentation or structured interviews designed to assess the minor’s understanding and willingness. Comparatively, surveys of transplant-centre practice show that many centres implement at least some formal mechanisms e.g., psychosocial assessment and documented assent or assent-support processes, though there remains substantial variation across settings 6 . This approach risks reducing assent to a symbolic gesture rather than a meaningful expression of participation. While parental consent remains legally decisive, the ethical purpose of assent lies in recognising the minor as a moral agent whose perspective matters. When assent processes are informal and undocumented, the child’s voice may be acknowledged in principle but marginalised in practice. International standards also attempt to protect the donor’s voice indirectly through institutional design, for example, FACT–JACIE standards require the donor’s suitability to be evaluated by a clinician who is not the recipient’s clinician, supporting a more independent donor-focused assessment 7 . The findings further suggest that older children and adolescents may occupy a particularly ambiguous position. Some clinicians reported privately consulting teenage donors, yet the absence of institutional guidelines leaves significant variation in how such conversations occur and whether expressions of reluctance would meaningfully influence the final decision. As a result, this suggests that the participatory right of minor donors remain unevenly protected across cases. This gap is important because international consensus recommendations increasingly recognise paediatric-specific psychosocial issues and the need for structured attention to donor welfare and voluntariness 8 . Therefore, there is an urgent need to ensure structured assent procedures are embedded in the practice. Such an approach would not undermine parental authority or clinical judgment. Rather, it would provide a mechanism through which children’s perspectives are systematically incorporated into decision-making processes that directly affect their bodies and wellbeing. International practice models illustrate practical options, including donor-advocate approaches (AAP) and independent or third-party safeguards in some jurisdictions when minors donate in high-stakes contexts 9 . 5.4 Constrained voluntariness within family structures Voluntariness represents a core ethical requirement in medical decision-making, yet the findings demonstrate the complexity of applying this principle within family-based donation. Participants consistently described situations in which minor donors appeared willing to help a sibling but were also embedded within emotionally intense family circumstances. The expectation to contribute to a sibling’s survival often generated a strong sense of moral obligation 10 . From a relational autonomy perspective, such dynamics are not unusual. Decisions within families are rarely made in isolation; they are shaped by relationships, cultural norms, and shared responsibilities. In collectivist social contexts, moral duties toward family members may carry significant weight. However, recognising relational influences does not eliminate the need to safeguard voluntariness. The findings suggest that what appears to be voluntary agreement may in some cases reflect structural pressure rather than free choice. Children may internalise the expectation to help a sibling and feel unable to refuse, particularly when parents and clinicians emphasise the life-saving potential of the transplant. In these circumstances, voluntariness is difficult to assess unless there are protected opportunities for the minor to speak privately, and a clear process for responding to hesitation or dissent. For this reason, several international approaches build “independence” into the assessment itself, rather than relying solely on family consent. In the United States, the American Academy of Pediatrics recommends safeguards such as an independent donor advocate and a donor-focused assessment that treats the minor donor’s welfare as distinct from the recipient’s interests 11 . Accreditation standards also pursue the same aim through structural separation: under FACT–JACIE, allogeneic donor suitability should be evaluated by a clinician who is not the recipient’s clinician, helping to reduce competing loyalties and making donor-centred discussion more feasible 12 . UK-focused ethical analysis has likewise considered how AAP-style safeguards might be adapted within local legal and clinical contexts, again underscoring the value of independent assessment mechanisms when minors donate in high-stakes situations 13 . The absence of such mechanisms in the Malaysian context leaves clinicians responsible for identifying subtle forms of coercion without formal tools to do so. 5.5 Institutional reliance on discretion A recurring theme across the findings is the extensive reliance on institutional and professional discretion. In the absence of national guidelines or statutory requirements, transplant teams develop their own approaches to donor assessment and consent practices. While this flexibility allows clinicians to respond to complex cases, it also creates variability in how ethical safeguards are applied. Over time, such variability can produce what may be described as ethical drift, a gradual shift in which informal practices replace structured ethical safeguards. In urgent clinical situations, procedures designed to protect the minor donor may be shortened, omitted, or interpreted flexibly in order to facilitate transplantation. When these practices become routine, the boundary between ethical accommodation and ethical compromise becomes increasingly blurred. The findings suggest that Malaysian clinicians are aware of this tension and often express discomfort with the absence of clear standards. Several participants emphasised the need for national guidelines that would provide consistent procedures without undermining clinical judgment. This perspective reflects a broader recognition that ethical decision-making in complex medical contexts benefits from institutional support rather than reliance on individual discretion alone. 5.6 Professional support for regulatory reform Comparative literature suggests that safeguards for minor donors can be strengthened without preventing sibling donation or unduly delaying clinical care. In the United States, professional guidance has emphasised that the interests of the minor donor must be assessed independently from those of the recipient, and that additional protections are needed where minors are asked to undergo a procedure that offers no direct medical benefit to them 14 . Related recommendations in the transplant literature likewise stress the importance of donor-focused evaluation, attention to psychosocial wellbeing, and procedures that reduce conflicts between donor and recipient interests 15 . Empirical research also shows that many transplant centres have introduced at least some formal mechanisms to support minor donors, including psychosocial assessment, structured assent-related practices, and follow-up processes, although implementation remains variable across settings 16 . UK-focused ethical and legal analysis has similarly argued for stronger safeguards when minors serve as haematopoietic stem cell donors, particularly where parental decision-making and recipient need may overshadow the minor donor’s own welfare and willingness 17 . These comparative approaches do not prohibit sibling donation. Rather, they introduce procedural safeguards intended to verify voluntariness, support the minor’s participation, and ensure that donor welfare receives systematic consideration alongside recipient treatment. Mechanisms such as donor-focused assessment, structured assent procedures, and psychosocial review are especially important in paediatric contexts, where family loyalty and medical urgency may make refusal difficult to express 18 . For Malaysia, the value of these examples lies not in direct policy transplantation, but in showing how ethical principles can be translated into practical institutional measures. This is consistent with the views of participants in the present study, many of whom supported clearer guidance on assent, documentation, psychological assessment, and independent review processes. Even modest reforms, such as standardised assent documentation, routine psychosocial screening, or separation between donor and recipient assessment functions, could improve consistency in donor protection while preserving clinical flexibility. 5.7 Implications for Malaysian Governance Overall, the findings indicate a clear need for a structured framework governing minor donor participation in paediatric transplantation. Such a framework could emerge through professional guidelines, institutional protocols, or legislative reform. Importantly, the objective of reform is not to restrict clinical practice but to ensure that ethical protections for donor children are applied consistently across cases. Introducing national guidance would provide several benefits. First, it would clarify the ethical responsibilities of clinicians when assessing donor suitability. Second, it would ensure that children’s participatory rights and welfare are systematically considered. Third, it would reduce the reliance on individual discretion, thereby promoting fairness and consistency across institutions. In this sense, governance reform should be understood not as a constraint on medical practice but as an enabling structure that supports ethically robust decision-making. In paediatric transplantation, where the stakes involve the wellbeing of multiple children within the same family, the presence of clear ethical safeguards is essential to maintaining both clinical integrity and public trust. 5.8 Legal and Ethical Implications The findings of this study raise significant concerns about the protection of minor donors within Malaysia’s current legal and institutional landscape. While paediatric HSCT is governed by sound clinical protocols, the ethical dimensions of involving children as donors are managed without the support of clear statutory guidelines. This absence places heavy reliance on the professional discretion of individual medical practitioners, creating variability in how fundamental principles such as consent, voluntariness, and best interests are applied. From an ethical standpoint, the lack of a structured assent process runs counter to established international norms, including Article 12 of the Convention on the Rights of the Child (CRC), which affirms the right of children capable of forming their own views to express them freely in all matters affecting them. Although medical practitioners in this study acknowledged the value of including donor children in the process, their involvement was informal and often symbolic. In practice, the donor child's voice was typically subordinated to parental authority and the clinical imperative to proceed with treatment. Similarly, voluntariness a core requirement in both medical ethics and international law, is undermined when children are placed in emotionally charged situations without adequate safeguards. The study revealed that minor donors may experience silent pressure to comply, especially in families facing the life-threatening illness of a sibling. Without mechanisms such as independent donor advocates or psychological assessments, the system offers little to ensure that a child’s apparent agreement is genuinely voluntary. The reliance on discretion also has legal consequences. In the absence of a national regulatory framework, medical practitioners are left vulnerable to future liability, should a donor experience adverse outcomes or challenge the process retrospectively. Furthermore, the variability in how institutions handle donor involvement raises potential concerns around fairness and equality of treatment two principles foundational to both legal ethics and administrative law. Collectively, these findings point to a systemic gap: one in which clinical excellence is not matched by ethical consistency or legal clarity. This misalignment risks normalising informal practices that may compromise the rights of child donors, even when professionals act in good faith. 5.9 Lessons from Other Jurisdictions While Malaysia currently lacks specific legislation or formal policy regulating the use of minor donors in haematopoietic stem cell transplantation (HSCT), several jurisdictions have introduced structured models that may offer valuable guidance. These models demonstrate how regulatory frameworks can safeguard children’s rights without obstructing urgent medical care. In the United Kingdom, for example, the protection of minor donors in paediatric HSCT is supported through independent assessment mechanisms. Under the Human Tissue Authority framework, an independent assessor who is not part of the treating team or family interviews the proposed minor donor separately to evaluate voluntariness, age-appropriate understanding, and whether any coercion or undue influence is present. This approach helps ensure that the donor’s interests are considered independently from those of the recipient and provides a procedural safeguard for the minor’s participation in decision-making 19 . The United States has implemented similar safeguards. In 2010, the Bioethics Committee of the American Academy of Pediatrics recommends an independent psychosocial evaluation of all minor donors, including private interviews and age-appropriate counselling. While not federally mandated, this standard has become embedded in many hospital-based ethics policies. The focus is on creating procedural checks that verify voluntariness, ensure the child’s emotional welfare, and provide documentation that informed discussions have taken place 20 . Some European countries, such as Germany and the Netherlands, have introduced legal thresholds for donor eligibility, including minimum age requirements and judicial oversight in certain cases. These approaches, while more restrictive, are designed to protect donor children from being exposed to undue risk or coercion in highly emotive family contexts. What these models share is a recognition that clinical urgency should not override the need for ethical consistency. By embedding clear procedures such as donor assent protocols, independent assessments, and documentation requirements these jurisdictions strike a balance between life-saving treatment and the protection of vulnerable minors. Importantly, these frameworks do not seek to eliminate family-based donation, but rather to regulate it in ways that are transparent, accountable, and child-centred. 5.10 The Case for Reform: Towards a Malaysian Framework The findings of this study, viewed alongside international practices, point to the urgent need for a clear, context-sensitive framework governing the use of minor donors in Malaysia. While medical practitioners interviewed expressed ethical concern and professional care, their ability to consistently safeguard donor children was constrained by the absence of institutional and legal guidance. A Malaysian framework need not replicate foreign models in their entirety, but it can draw from them to develop standards that reflect both global ethical norms and local clinical realities. The introduction of institutional protocols such as assent documentation, age-sensitive donor assessments, and optional donor advocates could be operationalised within existing healthcare structures without disrupting clinical workflow. Participants themselves called for such tools, citing the need for clarity, fairness, and consistency in ethically sensitive cases. Legislative support, while more complex to implement, would further anchor these safeguards in legal obligation. Such a statute need not be prescriptive in detail, but could establish minimum requirements for voluntary participation, best interests’ assessment, and informed parental consent. It could also delegate procedural specifics to a national guideline or professional code of practice. Importantly, reform should not be seen as a constraint on medical judgment or parental decision-making. Rather, it offers a system of shared accountability ensuring that the child donor’s welfare is not lost amid the urgency to save a sibling’s life. A national framework would help distribute ethical responsibility more evenly, reduce the discretionary burden on individual medical practitioners, and uphold the principles of child protection under Malaysia’s broader obligations to international human rights standards. As Malaysia continues to strengthen its paediatric and transplant services, the introduction of legal and institutional safeguards for minor donors represents not only a medical priority, but a moral and legal imperative. 5.11 Limitations This study has several limitations. First, data were collected from a single public university transplant centre, which may not reflect practices in private hospitals or other regions of Malaysia. Second, the study captures the perspectives of healthcare professionals but does not include interviews with donor children, recipients, or parents. As such, it provides insight into institutional reasoning rather than lived donor experience. Third, cultural and religious dimensions of family decision-making were referenced by participants but not explored in depth; future research may benefit from interdisciplinary engagement with socio-cultural analysis. Finally, while the study adopts a child-rights normative framework, alternative ethical paradigms, such as communitarian or Islamic bioethical perspectives, may yield additional interpretive insights. These limitations do not diminish the relevance of the findings but rather indicate avenues for further empirical and normative inquiry. 6. Conclusion This study has shown that the ethical governance of minor sibling stem cell donation in Malaysia is shaped less by formal regulation than by clinical discretion, family negotiation, and institutional habit. Although healthcare professionals described acting with care and ethical awareness, the absence of structured safeguards has produced variability in donor assessment, assent practices, and protection of donor welfare. Viewed through the child-rights framework adopted in this article, the findings raise two central concerns. First, Article 3 of the Convention on the Rights of the Child requires that the best interests of the child be a primary consideration in decisions affecting them. Yet the findings suggest that donor welfare is often considered within the broader goal of saving the recipient sibling, rather than through an independent assessment of the donor child’s own physical, emotional, and psychological interests. Second, Article 12 requires that children’s views be heard and given due weight according to age and maturity. In practice, however, assent was described as largely informal, inconsistent, and secondary to parental authorisation, leaving participatory rights only partially realised. Relational autonomy further helps explain why willingness in this setting cannot be understood as a purely individual choice. Minor donors make decisions within relationships of dependence, family loyalty, cultural expectation, and medical urgency. These conditions do not invalidate family-centred decision-making, but they do mean that voluntariness requires active protection rather than assumption. Structural vulnerability sharpens this point by showing that the donor child’s position is not merely personally vulnerable, but institutionally vulnerable: legal dependency, emotional pressure, and non-therapeutic medical risk are intensified when no formal mechanisms exist to provide private assessment, psychosocial review, or donor-focused advocacy. The Malaysian case therefore contributes to broader bioethical debate by showing how governance gaps can transform ethical principles into discretionary practices. The issue is not whether minor donation should ever occur, but whether it can occur under conditions that genuinely protect the donor child. A Malaysian framework, whether statutory, regulatory, or professional, would help translate best interests, participation, and voluntariness from ethical ideals into operational safeguards. In paediatric transplantation, saving one child should not depend on weakening the protections owed to another. Declarations Funding: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Competing interests: The author declares no competing interests. Ethics approval: Ethical approval for this research was obtained from the university’s research ethics committee prior to data collection. Consent to participate : Written informed consent was obtained from all participants prior to the interviews. Consent for publication : Not applicable. No identifiable personal information of participants is included in this manuscript. References World Health Organization, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010) Bitan M et al (2016) ‘Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association’ 22(1) Biology of Blood and Marrow Transplantation 96. American Academy of Pediatrics Committee on Bioethics (2010) ‘Children as Hematopoietic Stem Cell Donors’ 125(2) Pediatrics 392 Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 (1990) September art 12 Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 3.1. Lori, Wiener et al (2019) ‘Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors’ 54(11) Bone Marrow Transplantation 1780; Connelly-Smith LS (2019) Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection’ in Best Practices of Apheresis in Hematopoietic Cell Transplantation. Springer, p 23 Halter JP et al (2022) ‘Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues’ 9(8) The Lancet Haematology e605. American Academy of Pediatrics Committee on Bioethics (2010) ‘Children as Hematopoietic Stem Cell Donors’ 125(2) Pediatrics 392 Then SN, Kerridge IH, Marks M (2018) ‘Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex’ 208(8) Medical Journal of Australia 351. American Academy of Pediatrics Committee on Bioethics (2010) ‘Children as Hematopoietic Stem Cell Donors’ 125(2) Pediatrics 392 Chan TK, Tipoe GL (2013) ‘The Policy Statement of the American Academy of Pediatrics – Children as Hematopoietic Stem Cell Donors – A Proposal of Modifications for Application in the UK’ 14 BMC Medical Ethics 43. Gary E, Switzer et al (2019) ‘Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors’ 54(11) Bone Marrow Transplantation 1780 Nina, Worel et al (2022) ‘Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues’ 9(8) The Lancet Haematology e605, e610 Footnotes World Health Organization, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010). M Bitan et al, ‘Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association’ (2016) 22(1) Biology of Blood and Marrow Transplantation 96. American Academy of Pediatrics Committee on Bioethics, ‘Children as Hematopoietic Stem Cell Donors’ (2010) 125(2) Pediatrics 392. Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 12. Convention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 3. Lori Wiener et al, ‘Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors’ (2019) 54(11) Bone Marrow Transplantation 1780; L S Connelly-Smith, ‘Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection’ in Best Practices of Apheresis in Hematopoietic Cell Transplantation (Springer, 2019) 23. J P Halter et al, ‘Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues’ (2022) 9(8) The Lancet Haematology e605. American Academy of Pediatrics Committee on Bioethics, ‘Children as Hematopoietic Stem Cell Donors’ (2010) 125(2) Pediatrics 392; S N Then, I H Kerridge and M Marks, ‘Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex’ (2018) 208(8) Medical Journal of Australia 351, 352. American Academy of Pediatrics Committee on Bioethics, ‘Children as Hematopoietic Stem Cell Donors’ (2010) 125(2) Pediatrics 392. L S Connelly-Smith, ‘Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection’ in Best Practices of Apheresis in Hematopoietic Cell Transplantation (Springer, 2019) 23. T K Chan and G L Tipoe, ‘The Policy Statement of the American Academy of Pediatrics – Children as Hematopoietic Stem Cell Donors – A Proposal of Modifications for Application in the UK’ (2013) 14 BMC Medical Ethics 43. American Academy of Pediatrics Committee on Bioethics, ‘Children as Hematopoietic Stem Cell Donors’ (2010) 125(2) Pediatrics 392. M Bitan et al, ‘Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association’ (2016) 22(1) Biology of Blood and Marrow Transplantation 96; Nina Worel et al, ‘Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues’ (2022) 9(8) The Lancet Haematology e605. Gary E Switzer et al, ‘Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors’ (2019) 54(11) Bone Marrow Transplantation 1780 T K Chan and G L Tipoe, ‘The Policy Statement of the American Academy of Pediatrics – Children as Hematopoietic Stem Cell Donors – A Proposal of Modifications for Application in the UK’ (2013) 14 BMC Medical Ethics 43. Lori Wiener et al, ‘Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors’ (2019) 54(11) Bone Marrow Transplantation 1780; American Academy of Pediatrics Committee on Bioethics, ‘Children as Hematopoietic Stem Cell Donors’ (2010) 125(2) Pediatrics 392. T K Chan and G L Tipoe, ‘The Policy Statement of the American Academy of Pediatrics – Children as Hematopoietic Stem Cell Donors – A Proposal of Modifications for Application in the UK’ (2013) 14 BMC Medical Ethics 43; S N Then, I H Kerridge and M Marks, ‘Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex’ (2018) 208(8) Medical Journal of Australia 351. Nina Worel et al, ‘Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues’ (2022) 9(8) The Lancet Haematology e605, e610. Additional Declarations The authors declare no competing interests. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9613459","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":634486260,"identity":"caf531d0-7475-4a82-8132-e7d1b05252d6","order_by":0,"name":"Sharifa Binti Muhammad Zahabar","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABE0lEQVRIie3QMUvEMBTA8ZRAXJ50bYnXzxAJVMSC+FGC0KnuDg45CnUp3lrBryAcCJ1zBO6WA9dCBS2Ck0Pl4DaL1kEOpOHcRPJfHjz48UgQstn+YO7O+LJtoQtc5MjvrWcifq7nTrGnuC+3JayKYwyRElO1sTUSpJKwKZIHzu91uoILJG4lntWASiEHhCOXB6xdvgRhJTIKcyRKRU6PANWDBDs5869zzMPKyXBCegIhNRGCgdHdDou7ySxdJV1P3LWRACExBdBiioSkZ9nXFWIkHmC9X0DMvf4t71ceLzXhhzes5kPk+LEZP7UQBe5k8fxWrKNRuUib6vW8Hg2RH1c/f6SfDJ1sSzbu/1rYbDbbf+0DGGVfJ8jdjwEAAAAASUVORK5CYII=","orcid":"https://orcid.org/0009-0001-4309-7936","institution":"University of Malaya","correspondingAuthor":true,"prefix":"","firstName":"Sharifa","middleName":"Binti Muhammad","lastName":"Zahabar","suffix":""},{"id":634486261,"identity":"e822bad9-3407-4d52-ad17-096ded2fc70e","order_by":1,"name":"DR MOHAMMAD FIRDAUS BIN ABDUL AZIZ","email":"","orcid":"","institution":"Deputy Dean (Research \u0026 Innovation), Faculty of Law","correspondingAuthor":false,"prefix":"DR","firstName":"MOHAMMAD","middleName":"FIRDAUS BIN ABDUL","lastName":"AZIZ","suffix":""}],"badges":[],"createdAt":"2026-05-05 03:46:05","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":true,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-9613459/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9613459/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":109204625,"identity":"c7062280-d68f-4d42-a3dd-16e73077d8d1","added_by":"auto","created_at":"2026-05-13 15:01:31","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":226363,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9613459/v1/a2e9d985-383a-42b6-97a8-b7708b7563c2.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003eWhen Minors Become Donors: Ethical and Legal Gaps in Malaysian Paediatric STEM Cell Transplantation\u003c/p\u003e","fulltext":[{"header":"1. Introduction","content":"\u003cp\u003eIn paediatric haematopoietic stem cell transplantation (HSCT), the use of minor siblings as donors introduces complex legal and ethical considerations. While the procedure may offer curative potential for the recipient child, it imposes significant emotional, psychological, and physical burdens on the minor donor who may have limited capacity to understand, consent to, or decline the procedure. International bioethics discourse continues to debate the legitimacy of involving minors in donation, especially where the risks to the donor are non-therapeutic and the benefits indirect. Central to these debates are questions around voluntariness, informed assent, and institutional responsibility in protecting vulnerable donors.\u003c/p\u003e \u003cp\u003eIn Malaysia, no statutory or formalised regulatory framework currently governs the selection, consent process, or protection of minor donors in paediatric HSCT. Clinical decisions are instead guided by institutional discretion, professional norms, and familial expectations. This regulatory vacuum creates significant variability in practice, and raises questions about how healthcare professionals navigate consent, risk, and ethical responsibility. While international guidelines such as those from the American Academy of Pediatrics and the World Marrow Donor Association provide useful benchmarks, their applicability within the Malaysian context has not been systematically explored.\u003c/p\u003e \u003cp\u003eThis article examines how medical practitioners and transplant personnel experience and respond to the ethical and legal ambiguities that arise in minor donor involvement. Grounded in qualitative interviews at a public university hospital in Malaysia, the study situates these experiences within broader ethical, legal, and policy frameworks. The analysis aims to inform future policy development by clarifying practice-based concerns and identifying key areas where institutional and legal reform are most urgently needed.\u003c/p\u003e"},{"header":"2. Legal and Ethical Framework for Minor Donors","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 International Ethical Principles\u003c/h2\u003e \u003cp\u003e International bodies have developed detailed ethical frameworks for the protection of minor haematopoietic stem cell (HSC) donors. The World Health Organization\u003csup\u003e1\u003c/sup\u003e underscores the need for child protection mechanisms, including psychosocial support and ethical oversight. Statements from the World Marrow Donor Association (WMDA) and the American Academy of Pediatrics (AAP) emphasise safeguards to reduce conflicts of interest, including donor screening/consent by clinicians not involved in the recipient\u0026rsquo;s care and assessment by an independent donor advocate \u003csup\u003e2\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe American Academy of Pediatrics \u003csup\u003e3\u003c/sup\u003e similarly advises that minors should be considered donors only in life-saving contexts, and only when safeguards such as a donor advocate are in place. The UN Convention on the Rights of the Child (CRC), to which Malaysia is a signatory, affirms the right of children to express their views freely (Article 12)\u003csup\u003e4\u003c/sup\u003e and to have their best interests treated as a primary consideration in all decisions affecting them (Article 3)\u003csup\u003e5\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThese instruments form a shared international consensus: that paediatric donation must occur under strict conditions that protect the minor donor\u0026rsquo;s autonomy, dignity, and welfare.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Consent, Assent in Legal Theory\u003c/h2\u003e \u003cp\u003eLegal systems differentiate between consent (provided by legally competent adults) and assent (affirmative agreement from a minor not legally competent to consent). In paediatric medical ethics, both are seen as necessary to ensure that the minor\u0026rsquo;s perspective is acknowledged. The doctrine of best interest further mandates that any medical intervention involving a minor must serve their physical, emotional, and psychological welfare.\u003c/p\u003e \u003cp\u003eIn the context of sibling donation, however, the donor receives no direct medical benefit. This creates an ethical tension between the urgency of saving a recipient sibling and the obligation to protect the minor donor from undue harm. Without mechanisms for verifying voluntariness, there is a risk that family loyalty, parental pressure, or institutional urgency may override the donor\u0026rsquo;s actual wishes.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Malaysian Legal and Institutional Landscape\u003c/h2\u003e \u003cp\u003eMalaysia lacks a statutory framework governing paediatric stem cell donation. The Human Tissues Act 1974 does not address minors or stem cell transplantation specifically. In practice, parental consent is often accepted as sufficient, with no formal requirement for minor\u0026rsquo;s assent or independent donor advocacy.\u003c/p\u003e \u003cp\u003eInstitutional practices vary widely. Some hospitals involve multidisciplinary teams or psychological assessments, while others rely solely on the attending physician\u0026rsquo;s judgment. There is no nationwide ethical protocol for donor assessment, nor is there a legal obligation to monitor donor outcomes post-procedure.\u003c/p\u003e \u003cp\u003eAlthough Malaysia ratified the CRC in 1995, its principles have not been fully operationalised in clinical transplant settings. The resulting legal vacuum leaves minor donors unprotected and healthcare professionals without formal guidance.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Comparative Approaches to Minor Donor Regulation\u003c/h2\u003e \u003cp\u003eWhile Malaysia lacks a regulatory framework specific to minor stem cell donors, some jurisdictions have implemented more structured safeguards. These serve as useful reference points for understanding how legal systems can respond to the ethical complexities of paediatric donation.\u003c/p\u003e \u003cp\u003eIn the United Kingdom, the Human Tissue Authority (HTA) plays a central role in regulating haematopoietic stem cell donations involving minors. Where a minor is proposed as a donor, the process requires independent assessment to ensure that the minor\u0026rsquo;s participation is voluntary and in their best interests. An independent assessor, not involved in the medical team or family, is appointed to interview the minor donor separately. This ensures that the minor understands the nature of the procedure (in an age-appropriate way), and that no coercion or undue influence is present.\u003c/p\u003e \u003cp\u003eAdditionally, UK practice distinguishes clearly between consent and assent, requiring both parental consent and the minor\u0026rsquo;s affirmative willingness to participate, where possible. These procedural safeguards reflect a broader commitment to minor autonomy and welfare, as well as legal accountability for medical practitioners and institutions. They contrast sharply with Malaysia\u0026rsquo;s current approach, where no equivalent mechanisms such as donor advocacy, mandated assent, or independent review are formally required. The UK framework offers a practical model for how regulatory oversight can reinforce ethical standards in the context of paediatric stem cell transplantation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e2.5 Normative Framework: Child Rights, Relational Autonomy, and Structural Vulnerability\u003c/h2\u003e \u003cp\u003eThis study is grounded in a child-rights-based bioethical framework informed by three interlocking normative principles: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) the best interests principle, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) participatory rights of the minor, and (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) relational understandings of autonomy within contexts of vulnerability.\u003c/p\u003e \u003cp\u003eFirst, Article 3 of the United Nations Convention on the Rights of the Child (CRC) establishes that the best interests of the minor must be a primary consideration in all decisions affecting them. In the context of sibling stem cell donation, this principle requires independent assessment of the minor donor welfare, distinct from the clinical interests of the recipient sibling. Where the donor derives no direct medical benefit, the ethical justification must rest on demonstrable minimal risk and the safeguarding of psychological and emotional wellbeing.\u003c/p\u003e \u003cp\u003eSecond, Article 12 of the CRC affirms the child\u0026rsquo;s right to express views freely in matters affecting them, with due weight given according to age and maturity. Assent, therefore, is not merely a symbolic courtesy but a procedural manifestation of participatory rights. Failure to meaningfully incorporate the minor\u0026rsquo;s perspective risks reducing them to an instrument of familial or medical necessity.\u003c/p\u003e \u003cp\u003eThird, this study draws upon relational autonomy theory, which recognises that decision-making occurs within networks of dependency, cultural expectations, and familial obligations. In collectivist contexts such as Malaysia, family solidarity may shape moral reasoning in ways that complicate liberal individualist models of autonomy. However, relational autonomy does not negate the need for voluntariness; rather, it demands heightened vigilance against subtle coercion embedded within family structures.\u003c/p\u003e \u003cp\u003eFinally, vulnerability theory provides a structural lens through which to understand the minor donor\u0026rsquo;s position. Minor donors are uniquely vulnerable, whereby they are legally dependent, emotionally embedded in family systems, and exposed to non-therapeutic medical risk. In the absence of institutional safeguards, this vulnerability is not merely personal but systemic.\u003c/p\u003e \u003cp\u003eTogether, these normative principles provide the evaluative foundation for assessing whether current Malaysian practices adequately protect minor donors. The empirical findings are interpreted against these ethical benchmarks.\u003c/p\u003e \u003c/div\u003e"},{"header":"3. Methodology: Ethical Decision-Making in Practice","content":"\u003cp\u003e This study adopted a qualitative approach to explore how healthcare professionals navigate ethical uncertainties in the selection of minor haematopoietic stem cell donors within Malaysia\u0026rsquo;s public healthcare system. The focus was on how ethical principles such as voluntariness, informed consent, and the best interests of the minor are operationalised or compromised in clinical practice, especially in the absence of specific legal or institutional frameworks. The research question was grounded in a normative concern: whether and how current practices adequately protect the rights of minor donors.\u003c/p\u003e \u003cp\u003eData were collected through in-depth, semi-structured interviews with fifteen participants directly involved in paediatric HSCT. These included healthcare practitioners transplant coordinators, and nursing personnel based in a leading Malaysian transplant centre. Participants were selected through purposive sampling to ensure diverse professional perspectives across the transplant process. Interviews were conducted in person and guided by a thematically structured interview protocol, focusing on clinical decision-making, consent procedures, familial dynamics, and views on regulatory needs.\u003c/p\u003e \u003cp\u003e Interviews were audio-recorded with consent, transcribed verbatim, and subjected to thematic analysis. Quotations used in this article are drawn from the interview transcripts and have been lightly edited for readability where necessary, without altering their substantive meaning. Coding was conducted using both inductive and deductive methods, allowing patterns to emerge while also tracing ethical themes drawn from existing literature. Thematic saturation was reached after nine interviews, with the remaining used to verify recurring findings. The analysis was guided by a bioethical lens, examining how ethical reasoning was reflected or absent in the accounts of those making or supporting donor-related decisions.\u003c/p\u003e \u003cp\u003eTo ensure rigour, reflexive memos were maintained during coding, and emerging interpretations were discussed with a supervisory panel to avoid bias. Participants\u0026rsquo; anonymity was preserved, and all identifiable information was removed or anonymised in reporting. Ethical approval for this research was obtained from the university\u0026rsquo;s research ethics committee prior to data collection.\u003c/p\u003e \u003cp\u003eThis qualitative methodology enabled the integration of empirical insight with normative analysis, providing a grounded basis from which to assess both the ethical adequacy of current practices and the need for legal reform.\u003c/p\u003e"},{"header":"4. Findings: Stakeholder Narratives on Ethical Dilemmas","content":"\u003cp\u003eThis section presents the core themes that emerged from interviews with healthcare professionals involved in paediatric haematopoietic stem cell transplantation (HSCT) at a public university hospital in Malaysia. Participants were asked to reflect on how donor selection decisions are made in the absence of specific legal frameworks, and how ethical principles such as voluntariness, informed consent, child protection, and best interests are navigated in everyday clinical practice.\u003c/p\u003e \u003cp\u003eThe findings are grouped into five interrelated themes:\u003c/p\u003e \u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eClinical Decision-Making and Donor Selection\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eUnderstanding Consent and Assent\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eVoluntariness and Family Pressure\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eInstitutional Discretion and Absence of Guidelines\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eStakeholder Perspectives on Legal Reform\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e \u003cp\u003eAcross these themes, participants described a system in which ethical reasoning is shaped less by formal protocols and more by family dynamics, clinical urgency, and institutional norms. While many medical practitioners demonstrated a clear awareness of ethical obligations toward donor children, this awareness was not always supported by structured safeguards or consistent procedures. The findings highlight areas where ethical ambiguity persists, and where clearer legal and institutional guidance is needed to ensure the protection of minor donors.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003e4.1 Clinical Decision-Making and Donor Selection\u003c/h2\u003e \u003cp\u003eIn the absence of a dedicated legal framework in Malaysia, donor selection for paediatric haematopoietic stem cell transplantation (HSCT) is largely driven by clinical judgment and institutional norms. Participants reported that HLA compatibility remains the central criterion, but decisions are often shaped by urgency and familial expectations. Minor siblings are routinely considered when no adult match is available, and their eligibility is primarily assessed through clinical tests rather than psychosocial or ethical review.\u003c/p\u003e \u003cp\u003e Most participants acknowledged that the decision to proceed with a sibling donor is typically made by parents in consultation with medical professionals. The role of medical practitioner is often limited to advising on compatibility and procedural risk. As one haematologist observed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026rsquo;s the parents who decide, not the minor. We look at HLA match and blood work. If everything fits, we proceed.\u0026rdquo; (Participant 3, Haematologist)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere is no consistent use of formal criteria to determine whether the minor donor understands the procedure or is psychologically prepared. Several participants highlighted the lack of multidisciplinary assessment or minor-focused evaluation. A nurse commented:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;We don\u0026rsquo;t really have a checklist for donors. It depends on the consultant, and sometimes the urgency pushes things forward.\u0026rdquo; (Participant 6, Transplant Nurse)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eWhile some institutions consult child psychologists in complex cases, this appears to be the exception rather than the norm. Most participants confirmed that the absence of national guidelines leaves decisions to the discretion of the clinical team. This discretion is influenced not only by clinical factors but also by the emotional pressure families face. One medical practitioner noted:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;There is this silent assumption that the sibling will donate if matched. No one really questions it, unless the parents raise concerns.\u0026rdquo; (Participant 1, Medical Officer)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe findings suggest that donor selection processes are medically competent but ethically inconsistent. The focus on biological compatibility, while clinically necessary, often overshadows the minor donor\u0026rsquo;s capacity, willingness, or emotional readiness. In the absence of binding standards, ethical safeguards are applied variably, if at all.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003e4.2 Understanding Consent and Assent\u003c/h2\u003e \u003cp\u003eAlthough informed consent is a standard part of clinical procedures, the process involving minor donors in paediatric HSCT remains limited in both structure and depth. Participants consistently identified the legal authority of parents as central to decision-making, while the minor donor's voice was often treated as secondary or symbolic. The concept of assent, the minor\u0026rsquo;s affirmative agreement was widely acknowledged in theory but rarely implemented in practice.\u003c/p\u003e \u003cp\u003e Medical practitioners generally agreed that consent discussions occur primarily with parents. While most staff described efforts to inform the minor donor about the procedure, these efforts were largely informal and varied significantly by age and maturity. One medical officer noted:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;We explain it in simple terms, but it\u0026rsquo;s more to reassure than to ask permission. The parents\u0026rsquo; consent is what we rely on.\u0026rdquo; (Participant 5, Medical Officer)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis pattern reflects a broader tendency to interpret the minor\u0026rsquo;s involvement as a matter of comfort rather than agency. Several participants indicated that when a minor appeared distressed or hesitant, the family\u0026rsquo;s wishes often took precedence. A nurse commented:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes the child is scared, but the parents are convinced this is the only hope. It\u0026rsquo;s difficult to push back.\u0026rdquo; (Participant 9, Transplant Nurse)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eNo participants referred to using formal assent documents, and there was no indication that institutional policy required a separate process for engaging minor donors in a meaningful or developmentally appropriate way. Some interviewees acknowledged this gap, particularly in cases involving older children or adolescents.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;If the donor is a teenager, I think we should have more than just a conversation. But currently, we don't have guidelines for that.\u0026rdquo; (Participant 2, Haematologist)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis absence of structure leaves professionals to navigate the issue at their own discretion, with significant variation in how children\u0026rsquo;s views are considered. While some medical practitioners reported seeking private conversations with adolescent donors, others admitted that they would proceed even if the minor expressed reluctance, provided parental consent was in place.\u003c/p\u003e \u003cp\u003eThe findings suggest that the lack of formalised assent processes in paediatric HSCT practice places minor donors in a vulnerable position. Without institutional protocols or legal standards requiring their participation in decision-making, children\u0026rsquo;s rights under international norms particularly Article 12 of the CRC are only partially observed. Assent, when obtained, is informal, undocumented, and ultimately subordinate to parental authority.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e4.3 Voluntariness and Family Pressure\u003c/h2\u003e \u003cp\u003eThe concept of voluntariness is central to ethical decision-making in paediatric transplantation, yet participants described a context in which minor donors can rarely make a free and uncoerced choice. The family dynamic, urgency of the recipient\u0026rsquo;s condition, and cultural expectations of obedience all converge to create implicit pressure on the minor donor to comply.\u003c/p\u003e \u003cp\u003eSeveral medical practitioners acknowledged that while formal coercion does not occur, minor donors often internalise a sense of duty that makes refusal practically unthinkable. As one medical officer explained:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Even if the child doesn\u0026rsquo;t want to, they often won\u0026rsquo;t say it out loud. The family is under stress, and the child feels responsible.\u0026rdquo; (Participant 7, Medical Officer)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis emotional pressure is compounded by the lack of external support systems. Without a donor advocate or independent assessor, there is no mechanism to evaluate whether the donor\u0026rsquo;s agreement reflects genuine willingness or silent compliance. A transplant nurse noted:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e \u0026ldquo;I\u0026rsquo;ve seen cases where the child looks unsure, but the parents speak on their behalf. We don\u0026rsquo;t usually intervene unless something extreme happens.\u0026rdquo; (Participant 10, Nurse)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eParticipants also reflected on the cultural backdrop in which family authority tends to override individual preference. In many cases, the sibling donor is treated as an extension of parental will, especially in contexts where the transplant is seen as the only hope of saving the recipient child. As one haematologist observed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;It\u0026rsquo;s a moral obligation in the eyes of the family. Saying no would be seen as selfish, even if the child is scared.\u0026rdquo; (Participant 3, Haematologist)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe absence of formal tools to assess voluntariness means that medical practitioners rely heavily on observational judgment and familial reassurance. This creates ethical uncertainty, particularly in situations where the minor donor shows signs of hesitation or distress. The clinicians interviewed expressed concern over this grey area but admitted that institutional support for addressing it remains minimal.\u003c/p\u003e \u003cp\u003eThese findings suggest that while the rhetoric of voluntariness is present, the reality for minor donors is often shaped by silent pressures and unspoken expectations. Without structured mechanisms to safeguard autonomy such as donor advocates, independent assent interviews, or psychological evaluations the minor\u0026rsquo;s decision to donate may be less voluntary than it appears.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e4.4 Institutional Discretion and Absence of Guidelines\u003c/h2\u003e \u003cp\u003e Participants consistently noted the absence of formal legal or institutional guidelines governing the use of minor donors in haematopoietic stem cell transplantation (HSCT) in Malaysia. As a result, practices vary significantly across cases, with medical practitioners and hospital ethics boards exercising wide discretion in managing donor-related decisions.\u003c/p\u003e \u003cp\u003eSome medical practitioners expressed concern about the reliance on internal judgment in ethically complex scenarios. Without national-level protocols, there is no uniform approach to assess donor suitability beyond clinical compatibility. As one haematologist commented:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;There\u0026rsquo;s no policy, no checklist. We rely on precedent and what feels ethically sound in that moment.\u0026rdquo; (Participant 4, Consultant Haematologist)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis discretion was seen by some participants as necessary, particularly in a context where HSCT is a time-sensitive, high-stakes procedure. Yet others acknowledged that such flexibility risks inconsistency and ethical oversight. A medical officer observed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Every team has its own way. Some involve psychologists, some don\u0026rsquo;t. There\u0026rsquo;s no requirement. It depends on who\u0026rsquo;s in charge.\u0026rdquo; (Participant 6, Medical Officer)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe absence of standard operating procedures extends to areas such as assent documentation, donor risk assessment, and follow-up care. One transplant coordinator noted that even within the same institution, different consultants might take different approaches when assessing a minor's emotional readiness to donate.\u003c/p\u003e \u003cp\u003eIn high-pressure cases, institutional discretion tends to lean toward enabling transplantation rather than safeguarding the donor. Several participants reflected that in life-threatening situations for the recipient, the donor\u0026rsquo;s welfare becomes a secondary concern. A transplant nurse shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;When the patient\u0026rsquo;s condition is deteriorating, everyone is focused on saving them. The donor\u0026rsquo;s experience is not always at the centre.\u0026rdquo; (Participant 9, Transplant Nurse)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis theme highlights a structural gap in the current system. In the absence of national guidelines or institutional protocols, medical practitioners must rely on their own judgment when making ethically sensitive decisions. This places uneven responsibility on individual professionals and creates variability in how cases are handled. As a result, some donor children may receive more careful assessment and protection than others, depending not on policy, but on who is making the decision.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003e4.5 Stakeholder Perspectives on Legal Reform\u003c/h2\u003e \u003cp\u003eSeveral participants expressed concern over the absence of legislation or regulatory guidance specific to minor donors in Malaysia. While acknowledging the sensitivity of regulating family decisions in healthcare, many felt that the current reliance on institutional discretion is insufficient to ensure consistent and ethical practices across cases.\u003c/p\u003e \u003cp\u003eOne clinician noted that although the clinical community operates with good intentions, this alone is not enough to safeguard children\u0026rsquo;s rights:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u003cem\u003eWe\u0026rsquo;re doing our best, but we\u0026rsquo;re making case-by-case judgments. There should be something clearer, something national to guide us.\u0026rdquo; (Participant 2, Haematologist)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe need for clear legal standards was particularly emphasised in relation to consent, voluntariness, and the role of the minor donor. Several interviewees suggested that a regulatory framework should establish a minimum age for assent, require documentation of the donor\u0026rsquo;s understanding, and mandate psychological assessments in all sibling donor cases. A transplant nurse reflected:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;It would help if we had a checklist or policy to follow especially with kids. Right now, it\u0026rsquo;s all very informal.\u0026rdquo; (Participant 8, Nurse)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSome participants proposed the adoption of a donor advocate model, similar to those used in other jurisdictions, where an independent party ensures that the minor donor\u0026rsquo;s interests are represented throughout the process. Others advocated for ethics committee review as a standard step before proceeding with paediatric donations.\u003c/p\u003e \u003cp\u003e There was general agreement that reform should not be overly rigid but rather support clinical practice by offering clear ethical boundaries and documentation requirements. One medical officer summarised this view:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;We don\u0026rsquo;t need a law that tells us everything, but we do need something to make sure every child is treated fairly no matter who the doctor is or which hospital.\u0026rdquo; (Participant 5, Medical Officer)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThese reflections indicate strong professional support for a structured framework whether legal or policy-based that would reduce variability and strengthen minor protection without undermining the role of clinical expertise or parental care.\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Discussion","content":"\u003cp\u003e This study explored how clinicians and healthcare professionals in a Malaysian transplant centre navigate the ethical challenges of involving minor siblings as haematopoietic stem cell donors. The findings revealed a system that functions largely in the absence of legal frameworks or institutional protocols, relying instead on clinical discretion and familial negotiation. While participants generally demonstrated ethical awareness and good intentions, the study identified significant variability in practice, with few structured safeguards to ensure voluntariness, informed consent, or the donor child\u0026rsquo;s welfare.\u003c/p\u003e \u003cp\u003eFive core themes emerged from the interviews. Donor selection was primarily driven by clinical urgency and HLA compatibility, often with limited psychosocial assessment. The concept of assent, though acknowledged, was inconsistently implemented and rarely documented. Voluntariness was found to be deeply shaped by family dynamics and cultural expectations, with donor children often assuming a silent obligation to comply. Institutional discretion filled the void left by legal and policy gaps, leading to variations in how children\u0026rsquo;s rights and protections were applied. Finally, many participants expressed a clear need for structured guidance, favouring national-level standards that could support both ethical practice and clinical decision-making.\u003c/p\u003e \u003cp\u003eThese findings suggest that while paediatric HSCT in Malaysia operates within a competent clinical system, it lacks the ethical infrastructure needed to consistently uphold the rights and welfare of minor donors. The reliance on discretion, though practical, risks producing inconsistent protections for children depending on the institution, the medical practitioners, or the urgency of the case.\u003c/p\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003e5.1 Interpreting the findings: ethics in a regulatory vacuum\u003c/h2\u003e \u003cp\u003e This study examined how healthcare professionals navigate the ethical complexities of involving minor siblings as haematopoietic stem cell (HSC) donors within a Malaysian transplant centre operating in the absence of clear statutory or institutional guidance. The findings reveal a clinical environment characterised by professional commitment and ethical awareness, yet structured by regulatory absence and institutional discretion. In such circumstances, ethical safeguards are often applied informally and unevenly, relying heavily on individual practitioners\u0026rsquo; judgment rather than systematic procedures.\u003c/p\u003e \u003cp\u003eAcross the five themes identified in the findings, several patterns emerge. Donor selection is driven primarily by clinical compatibility and the urgency of recipient treatment. The participation of the minor donor in decision-making remains limited, with assent practices largely informal and undocumented. Voluntariness is shaped by powerful family dynamics, where the moral imperative to save a sibling may override the minor donor\u0026rsquo;s ability to express reluctance. Finally, participants acknowledged the lack of formal protocols governing donor assessment, psychosocial evaluation, and follow-up care.\u003c/p\u003e \u003cp\u003eThese patterns illustrate how ethical reasoning within clinical practice often develops under conditions of uncertainty. In the absence of structured governance, practitioners must balance competing moral obligations: the urgency to save the recipient child, the duty to protect the minor donor, and respect for parental authority. While such discretion may be unavoidable in time-sensitive medical contexts, reliance on informal judgment risks producing uneven standards of protection for minor donors. Interpreting these findings through the normative framework outlined earlier child rights, relational autonomy, and structural vulnerability, reveals deeper ethical concerns within the current system.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003e5.2 Biologically driven donor selection\u003c/h2\u003e \u003cp\u003e The principle that the best interests of the minor should be a primary consideration is widely recognised in both medical ethics and international human rights law. As highlighted earlier, Article 3 of the Convention on the Rights of the Child (CRC) establishes that all decisions affecting children must prioritise their welfare. In the context of sibling stem cell donation, this principle requires careful evaluation of the minor donor\u0026rsquo;s physical, emotional, and psychological wellbeing.\u003c/p\u003e \u003cp\u003eThe empirical findings suggest that while clinicians are attentive to clinical safety, broader considerations of donor welfare are not systematically assessed. Donor eligibility is primarily determined through biological compatibility and procedural risk, with limited attention to psychosocial readiness or long-term emotional impact. Several participants indicated that psychological assessments are only occasionally conducted and are not embedded in standard practice.\u003c/p\u003e \u003cp\u003eThis pattern reflects a structural imbalance inherent in sibling transplantation. The medical urgency associated with treating the recipient child can shift institutional focus away from the minor donor\u0026rsquo;s independent interests. In such circumstances, the best interests of the minor donor risk becoming implicitly secondary to the therapeutic goals of the transplant procedure.\u003c/p\u003e \u003cp\u003e International ethical guidelines attempt to address this tension by requiring additional safeguards when minors are involved as donors. These include psychosocial evaluation, independent donor advocacy, and verification that the risks to the donor are minimal and proportionate. The absence of comparable safeguards within the Malaysian context means that the best interests principle is interpreted largely through clinical judgment rather than structured assessment.\u003c/p\u003e \u003cp\u003eImportantly, the empirical findings do not suggest negligence or indifference on the part of clinicians. Rather, they highlight how regulatory gaps can transform ethical obligations into discretionary practices. Without formal procedures to evaluate donor welfare independently of recipient need, the protection of minor donors becomes contingent on individual professional judgment rather than institutional standards.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e5.3 Informal and inconsistent assent practices\u003c/h2\u003e \u003cp\u003eA second key implication concerns the participatory rights of children in medical decision-making. Article 12 of the CRC affirms that children capable of forming views have the right to express those views in matters affecting them, and that those views should be given due weight according to age and maturity. Within medical ethics, this principle is typically operationalised through processes of informed consent. In the case of minors, who may not possess full legal capacity to consent, this participation is recognised through the practice of assent, whereby the minor\u0026rsquo;s agreement is sought alongside parental consent.\u003c/p\u003e \u003cp\u003eThe findings indicate that assent in Malaysian paediatric HSCT practice is largely informal. Clinicians reported explaining procedures to donors in age-appropriate ways, but these conversations were typically framed as reassurance rather than genuine decision-making opportunities. No participants reported using formal assent documentation or structured interviews designed to assess the minor\u0026rsquo;s understanding and willingness. Comparatively, surveys of transplant-centre practice show that many centres implement at least some formal mechanisms e.g., psychosocial assessment and documented assent or assent-support processes, though there remains substantial variation across settings\u003csup\u003e6\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThis approach risks reducing assent to a symbolic gesture rather than a meaningful expression of participation. While parental consent remains legally decisive, the ethical purpose of assent lies in recognising the minor as a moral agent whose perspective matters. When assent processes are informal and undocumented, the child\u0026rsquo;s voice may be acknowledged in principle but marginalised in practice. International standards also attempt to protect the donor\u0026rsquo;s voice indirectly through institutional design, for example, FACT\u0026ndash;JACIE standards require the donor\u0026rsquo;s suitability to be evaluated by a clinician who is not the recipient\u0026rsquo;s clinician, supporting a more independent donor-focused assessment\u003csup\u003e7\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe findings further suggest that older children and adolescents may occupy a particularly ambiguous position. Some clinicians reported privately consulting teenage donors, yet the absence of institutional guidelines leaves significant variation in how such conversations occur and whether expressions of reluctance would meaningfully influence the final decision. As a result, this suggests that the participatory right of minor donors remain unevenly protected across cases. This gap is important because international consensus recommendations increasingly recognise paediatric-specific psychosocial issues and the need for structured attention to donor welfare and voluntariness\u003csup\u003e8\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eTherefore, there is an urgent need to ensure structured assent procedures are embedded in the practice. Such an approach would not undermine parental authority or clinical judgment. Rather, it would provide a mechanism through which children\u0026rsquo;s perspectives are systematically incorporated into decision-making processes that directly affect their bodies and wellbeing. International practice models illustrate practical options, including donor-advocate approaches (AAP) and independent or third-party safeguards in some jurisdictions when minors donate in high-stakes contexts\u003csup\u003e9\u003c/sup\u003e.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003e5.4 Constrained voluntariness within family structures\u003c/h2\u003e \u003cp\u003e Voluntariness represents a core ethical requirement in medical decision-making, yet the findings demonstrate the complexity of applying this principle within family-based donation. Participants consistently described situations in which minor donors appeared willing to help a sibling but were also embedded within emotionally intense family circumstances. The expectation to contribute to a sibling\u0026rsquo;s survival often generated a strong sense of moral obligation\u003csup\u003e10\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eFrom a relational autonomy perspective, such dynamics are not unusual. Decisions within families are rarely made in isolation; they are shaped by relationships, cultural norms, and shared responsibilities. In collectivist social contexts, moral duties toward family members may carry significant weight. However, recognising relational influences does not eliminate the need to safeguard voluntariness.\u003c/p\u003e \u003cp\u003eThe findings suggest that what appears to be voluntary agreement may in some cases reflect structural pressure rather than free choice. Children may internalise the expectation to help a sibling and feel unable to refuse, particularly when parents and clinicians emphasise the life-saving potential of the transplant. In these circumstances, voluntariness is difficult to assess unless there are protected opportunities for the minor to speak privately, and a clear process for responding to hesitation or dissent. For this reason, several international approaches build \u0026ldquo;independence\u0026rdquo; into the assessment itself, rather than relying solely on family consent.\u003c/p\u003e \u003cp\u003eIn the United States, the American Academy of Pediatrics recommends safeguards such as an independent donor advocate and a donor-focused assessment that treats the minor donor\u0026rsquo;s welfare as distinct from the recipient\u0026rsquo;s interests\u003csup\u003e11\u003c/sup\u003e. Accreditation standards also pursue the same aim through structural separation: under FACT\u0026ndash;JACIE, allogeneic donor suitability should be evaluated by a clinician who is not the recipient\u0026rsquo;s clinician, helping to reduce competing loyalties and making donor-centred discussion more feasible\u003csup\u003e12\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eUK-focused ethical analysis has likewise considered how AAP-style safeguards might be adapted within local legal and clinical contexts, again underscoring the value of independent assessment mechanisms when minors donate in high-stakes situations\u003csup\u003e13\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe absence of such mechanisms in the Malaysian context leaves clinicians responsible for identifying subtle forms of coercion without formal tools to do so.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003e5.5 Institutional reliance on discretion\u003c/h2\u003e \u003cp\u003eA recurring theme across the findings is the extensive reliance on institutional and professional discretion. In the absence of national guidelines or statutory requirements, transplant teams develop their own approaches to donor assessment and consent practices. While this flexibility allows clinicians to respond to complex cases, it also creates variability in how ethical safeguards are applied.\u003c/p\u003e \u003cp\u003eOver time, such variability can produce what may be described as ethical drift, a gradual shift in which informal practices replace structured ethical safeguards. In urgent clinical situations, procedures designed to protect the minor donor may be shortened, omitted, or interpreted flexibly in order to facilitate transplantation. When these practices become routine, the boundary between ethical accommodation and ethical compromise becomes increasingly blurred.\u003c/p\u003e \u003cp\u003eThe findings suggest that Malaysian clinicians are aware of this tension and often express discomfort with the absence of clear standards. Several participants emphasised the need for national guidelines that would provide consistent procedures without undermining clinical judgment. This perspective reflects a broader recognition that ethical decision-making in complex medical contexts benefits from institutional support rather than reliance on individual discretion alone.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003e5.6 Professional support for regulatory reform\u003c/h2\u003e \u003cp\u003e Comparative literature suggests that safeguards for minor donors can be strengthened without preventing sibling donation or unduly delaying clinical care. In the United States, professional guidance has emphasised that the interests of the minor donor must be assessed independently from those of the recipient, and that additional protections are needed where minors are asked to undergo a procedure that offers no direct medical benefit to them\u003csup\u003e14\u003c/sup\u003e. Related recommendations in the transplant literature likewise stress the importance of donor-focused evaluation, attention to psychosocial wellbeing, and procedures that reduce conflicts between donor and recipient interests\u003csup\u003e15\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eEmpirical research also shows that many transplant centres have introduced at least some formal mechanisms to support minor donors, including psychosocial assessment, structured assent-related practices, and follow-up processes, although implementation remains variable across settings\u003csup\u003e16\u003c/sup\u003e. UK-focused ethical and legal analysis has similarly argued for stronger safeguards when minors serve as haematopoietic stem cell donors, particularly where parental decision-making and recipient need may overshadow the minor donor\u0026rsquo;s own welfare and willingness\u003csup\u003e17\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThese comparative approaches do not prohibit sibling donation. Rather, they introduce procedural safeguards intended to verify voluntariness, support the minor\u0026rsquo;s participation, and ensure that donor welfare receives systematic consideration alongside recipient treatment. Mechanisms such as donor-focused assessment, structured assent procedures, and psychosocial review are especially important in paediatric contexts, where family loyalty and medical urgency may make refusal difficult to express\u003csup\u003e18\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003e For Malaysia, the value of these examples lies not in direct policy transplantation, but in showing how ethical principles can be translated into practical institutional measures. This is consistent with the views of participants in the present study, many of whom supported clearer guidance on assent, documentation, psychological assessment, and independent review processes. Even modest reforms, such as standardised assent documentation, routine psychosocial screening, or separation between donor and recipient assessment functions, could improve consistency in donor protection while preserving clinical flexibility.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003e5.7 Implications for Malaysian Governance\u003c/h2\u003e \u003cp\u003e Overall, the findings indicate a clear need for a structured framework governing minor donor participation in paediatric transplantation. Such a framework could emerge through professional guidelines, institutional protocols, or legislative reform. Importantly, the objective of reform is not to restrict clinical practice but to ensure that ethical protections for donor children are applied consistently across cases.\u003c/p\u003e \u003cp\u003eIntroducing national guidance would provide several benefits. First, it would clarify the ethical responsibilities of clinicians when assessing donor suitability. Second, it would ensure that children\u0026rsquo;s participatory rights and welfare are systematically considered. Third, it would reduce the reliance on individual discretion, thereby promoting fairness and consistency across institutions.\u003c/p\u003e \u003cp\u003eIn this sense, governance reform should be understood not as a constraint on medical practice but as an enabling structure that supports ethically robust decision-making. In paediatric transplantation, where the stakes involve the wellbeing of multiple children within the same family, the presence of clear ethical safeguards is essential to maintaining both clinical integrity and public trust.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec23\" class=\"Section2\"\u003e \u003ch2\u003e5.8 Legal and Ethical Implications\u003c/h2\u003e \u003cp\u003eThe findings of this study raise significant concerns about the protection of minor donors within Malaysia\u0026rsquo;s current legal and institutional landscape. While paediatric HSCT is governed by sound clinical protocols, the ethical dimensions of involving children as donors are managed without the support of clear statutory guidelines. This absence places heavy reliance on the professional discretion of individual medical practitioners, creating variability in how fundamental principles such as consent, voluntariness, and best interests are applied.\u003c/p\u003e \u003cp\u003eFrom an ethical standpoint, the lack of a structured assent process runs counter to established international norms, including Article 12 of the Convention on the Rights of the Child (CRC), which affirms the right of children capable of forming their own views to express them freely in all matters affecting them. Although medical practitioners in this study acknowledged the value of including donor children in the process, their involvement was informal and often symbolic. In practice, the donor child's voice was typically subordinated to parental authority and the clinical imperative to proceed with treatment.\u003c/p\u003e \u003cp\u003eSimilarly, voluntariness a core requirement in both medical ethics and international law, is undermined when children are placed in emotionally charged situations without adequate safeguards. The study revealed that minor donors may experience silent pressure to comply, especially in families facing the life-threatening illness of a sibling. Without mechanisms such as independent donor advocates or psychological assessments, the system offers little to ensure that a child\u0026rsquo;s apparent agreement is genuinely voluntary.\u003c/p\u003e \u003cp\u003eThe reliance on discretion also has legal consequences. In the absence of a national regulatory framework, medical practitioners are left vulnerable to future liability, should a donor experience adverse outcomes or challenge the process retrospectively. Furthermore, the variability in how institutions handle donor involvement raises potential concerns around fairness and equality of treatment two principles foundational to both legal ethics and administrative law.\u003c/p\u003e \u003cp\u003eCollectively, these findings point to a systemic gap: one in which clinical excellence is not matched by ethical consistency or legal clarity. This misalignment risks normalising informal practices that may compromise the rights of child donors, even when professionals act in good faith.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003e5.9 Lessons from Other Jurisdictions\u003c/h2\u003e \u003cp\u003eWhile Malaysia currently lacks specific legislation or formal policy regulating the use of minor donors in haematopoietic stem cell transplantation (HSCT), several jurisdictions have introduced structured models that may offer valuable guidance. These models demonstrate how regulatory frameworks can safeguard children\u0026rsquo;s rights without obstructing urgent medical care.\u003c/p\u003e \u003cp\u003eIn the United Kingdom, for example, the protection of minor donors in paediatric HSCT is supported through independent assessment mechanisms. Under the Human Tissue Authority framework, an independent assessor who is not part of the treating team or family interviews the proposed minor donor separately to evaluate voluntariness, age-appropriate understanding, and whether any coercion or undue influence is present. This approach helps ensure that the donor\u0026rsquo;s interests are considered independently from those of the recipient and provides a procedural safeguard for the minor\u0026rsquo;s participation in decision-making\u003csup\u003e19\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe United States has implemented similar safeguards. In 2010, the Bioethics Committee of the American Academy of Pediatrics recommends an independent psychosocial evaluation of all minor donors, including private interviews and age-appropriate counselling. While not federally mandated, this standard has become embedded in many hospital-based ethics policies. The focus is on creating procedural checks that verify voluntariness, ensure the child\u0026rsquo;s emotional welfare, and provide documentation that informed discussions have taken place \u003csup\u003e20\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eSome European countries, such as Germany and the Netherlands, have introduced legal thresholds for donor eligibility, including minimum age requirements and judicial oversight in certain cases. These approaches, while more restrictive, are designed to protect donor children from being exposed to undue risk or coercion in highly emotive family contexts.\u003c/p\u003e \u003cp\u003eWhat these models share is a recognition that clinical urgency should not override the need for ethical consistency. By embedding clear procedures such as donor assent protocols, independent assessments, and documentation requirements these jurisdictions strike a balance between life-saving treatment and the protection of vulnerable minors. Importantly, these frameworks do not seek to eliminate family-based donation, but rather to regulate it in ways that are transparent, accountable, and child-centred.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec25\" class=\"Section2\"\u003e \u003ch2\u003e5.10 The Case for Reform: Towards a Malaysian Framework\u003c/h2\u003e \u003cp\u003eThe findings of this study, viewed alongside international practices, point to the urgent need for a clear, context-sensitive framework governing the use of minor donors in Malaysia. While medical practitioners interviewed expressed ethical concern and professional care, their ability to consistently safeguard donor children was constrained by the absence of institutional and legal guidance.\u003c/p\u003e \u003cp\u003eA Malaysian framework need not replicate foreign models in their entirety, but it can draw from them to develop standards that reflect both global ethical norms and local clinical realities. The introduction of institutional protocols such as assent documentation, age-sensitive donor assessments, and optional donor advocates could be operationalised within existing healthcare structures without disrupting clinical workflow. Participants themselves called for such tools, citing the need for clarity, fairness, and consistency in ethically sensitive cases.\u003c/p\u003e \u003cp\u003eLegislative support, while more complex to implement, would further anchor these safeguards in legal obligation. Such a statute need not be prescriptive in detail, but could establish minimum requirements for voluntary participation, best interests\u0026rsquo; assessment, and informed parental consent. It could also delegate procedural specifics to a national guideline or professional code of practice.\u003c/p\u003e \u003cp\u003eImportantly, reform should not be seen as a constraint on medical judgment or parental decision-making. Rather, it offers a system of shared accountability ensuring that the child donor\u0026rsquo;s welfare is not lost amid the urgency to save a sibling\u0026rsquo;s life. A national framework would help distribute ethical responsibility more evenly, reduce the discretionary burden on individual medical practitioners, and uphold the principles of child protection under Malaysia\u0026rsquo;s broader obligations to international human rights standards.\u003c/p\u003e \u003cp\u003eAs Malaysia continues to strengthen its paediatric and transplant services, the introduction of legal and institutional safeguards for minor donors represents not only a medical priority, but a moral and legal imperative.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec26\" class=\"Section2\"\u003e \u003ch2\u003e5.11 Limitations\u003c/h2\u003e \u003cp\u003eThis study has several limitations. First, data were collected from a single public university transplant centre, which may not reflect practices in private hospitals or other regions of Malaysia. Second, the study captures the perspectives of healthcare professionals but does not include interviews with donor children, recipients, or parents. As such, it provides insight into institutional reasoning rather than lived donor experience. Third, cultural and religious dimensions of family decision-making were referenced by participants but not explored in depth; future research may benefit from interdisciplinary engagement with socio-cultural analysis. Finally, while the study adopts a child-rights normative framework, alternative ethical paradigms, such as communitarian or Islamic bioethical perspectives, may yield additional interpretive insights. These limitations do not diminish the relevance of the findings but rather indicate avenues for further empirical and normative inquiry.\u003c/p\u003e \u003c/div\u003e"},{"header":"6. Conclusion","content":"\u003cp\u003eThis study has shown that the ethical governance of minor sibling stem cell donation in Malaysia is shaped less by formal regulation than by clinical discretion, family negotiation, and institutional habit. Although healthcare professionals described acting with care and ethical awareness, the absence of structured safeguards has produced variability in donor assessment, assent practices, and protection of donor welfare.\u003c/p\u003e \u003cp\u003eViewed through the child-rights framework adopted in this article, the findings raise two central concerns. First, Article 3 of the Convention on the Rights of the Child requires that the best interests of the child be a primary consideration in decisions affecting them. Yet the findings suggest that donor welfare is often considered within the broader goal of saving the recipient sibling, rather than through an independent assessment of the donor child\u0026rsquo;s own physical, emotional, and psychological interests. Second, Article 12 requires that children\u0026rsquo;s views be heard and given due weight according to age and maturity. In practice, however, assent was described as largely informal, inconsistent, and secondary to parental authorisation, leaving participatory rights only partially realised.\u003c/p\u003e \u003cp\u003eRelational autonomy further helps explain why willingness in this setting cannot be understood as a purely individual choice. Minor donors make decisions within relationships of dependence, family loyalty, cultural expectation, and medical urgency. These conditions do not invalidate family-centred decision-making, but they do mean that voluntariness requires active protection rather than assumption. Structural vulnerability sharpens this point by showing that the donor child\u0026rsquo;s position is not merely personally vulnerable, but institutionally vulnerable: legal dependency, emotional pressure, and non-therapeutic medical risk are intensified when no formal mechanisms exist to provide private assessment, psychosocial review, or donor-focused advocacy.\u003c/p\u003e \u003cp\u003e The Malaysian case therefore contributes to broader bioethical debate by showing how governance gaps can transform ethical principles into discretionary practices. The issue is not whether minor donation should ever occur, but whether it can occur under conditions that genuinely protect the donor child. A Malaysian framework, whether statutory, regulatory, or professional, would help translate best interests, participation, and voluntariness from ethical ideals into operational safeguards. In paediatric transplantation, saving one child should not depend on weakening the protections owed to another.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u003c/strong\u003e The author declares no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval:\u003c/strong\u003e Ethical approval for this research was obtained from the university’s research ethics committee prior to data collection.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate\u003c/strong\u003e: Written informed consent was obtained from all participants prior to the interviews.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e: Not applicable. No identifiable personal information of participants is included in this manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eWorld Health Organization, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010)\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBitan M et al (2016) \u0026lsquo;Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association\u0026rsquo; 22(1) Biology of Blood and Marrow Transplantation 96.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Academy of Pediatrics Committee on Bioethics (2010) \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; 125(2) Pediatrics 392\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eConvention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 (1990) September art 12\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eConvention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 3.1.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLori, Wiener et al (2019) \u0026lsquo;Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors\u0026rsquo; 54(11) Bone Marrow Transplantation 1780;\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eConnelly-Smith LS (2019) Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection\u0026rsquo; in Best Practices of Apheresis in Hematopoietic Cell Transplantation. Springer, p 23\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHalter JP et al (2022) \u0026lsquo;Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues\u0026rsquo; 9(8) The Lancet Haematology e605.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Academy of Pediatrics Committee on Bioethics (2010) \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; 125(2) Pediatrics 392\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eThen SN, Kerridge IH, Marks M (2018) \u0026lsquo;Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex\u0026rsquo; 208(8) Medical Journal of Australia 351.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Academy of Pediatrics Committee on Bioethics (2010) \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; 125(2) Pediatrics 392\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChan TK, Tipoe GL (2013) \u0026lsquo;The Policy Statement of the American Academy of Pediatrics \u0026ndash; Children as Hematopoietic Stem Cell Donors \u0026ndash; A Proposal of Modifications for Application in the UK\u0026rsquo; 14 BMC Medical Ethics 43.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGary E, Switzer et al (2019) \u0026lsquo;Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors\u0026rsquo; 54(11) Bone Marrow Transplantation 1780\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNina, Worel et al (2022) \u0026lsquo;Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues\u0026rsquo; 9(8) The Lancet Haematology e605, e610\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Footnotes","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eWorld Health Organization, WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation (2010).\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eM Bitan et al, \u0026lsquo;Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association\u0026rsquo; (2016) 22(1) Biology of Blood and Marrow Transplantation 96.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003e American Academy of Pediatrics Committee on Bioethics, \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; (2010) 125(2) Pediatrics 392.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eConvention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 12.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eConvention on the Rights of the Child, opened for signature 20 November 1989, 1577 UNTS 3 (entered into force 2 September 1990) art 3.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e \u003cem\u003eLori Wiener et al, \u0026lsquo;Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors\u0026rsquo; (2019) 54(11) Bone Marrow Transplantation 1780;\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eL S Connelly-Smith, \u0026lsquo;Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection\u0026rsquo; in Best Practices of Apheresis in Hematopoietic Cell Transplantation (Springer, 2019) 23.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eJ P Halter et al, \u0026lsquo;Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues\u0026rsquo; (2022) 9(8) The Lancet Haematology e605.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eAmerican Academy of Pediatrics Committee on Bioethics, \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; (2010) 125(2) Pediatrics 392;\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003e S N Then, I H Kerridge and M Marks, \u0026lsquo;Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex\u0026rsquo; (2018) 208(8) Medical Journal of Australia 351, 352.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e \u003cem\u003eAmerican Academy of Pediatrics Committee on Bioethics, \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; (2010) 125(2) Pediatrics 392.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e \u003cem\u003eL S Connelly-Smith, \u0026lsquo;Donor Evaluation for Hematopoietic Stem and Progenitor Cell Collection\u0026rsquo; in Best Practices of Apheresis in Hematopoietic Cell Transplantation (Springer, 2019) 23.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eT K Chan and G L Tipoe, \u0026lsquo;The Policy Statement of the American Academy of Pediatrics \u0026ndash; Children as Hematopoietic Stem Cell Donors \u0026ndash; A Proposal of Modifications for Application in the UK\u0026rsquo; (2013) 14 BMC Medical Ethics 43.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eAmerican Academy of Pediatrics Committee on Bioethics, \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; (2010) 125(2) Pediatrics 392.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eM Bitan\u003c/em\u003e et al, \u003cem\u003e\u0026lsquo;Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association\u0026rsquo; (2016) 22(1)\u003c/em\u003e Biology of Blood and Marrow Transplantation \u003cem\u003e96; Nina Worel\u003c/em\u003e et al, \u003cem\u003e\u0026lsquo;Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues\u0026rsquo; (2022) 9(8)\u003c/em\u003e The Lancet Haematology \u003cem\u003ee605.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eGary E Switzer et al, \u0026lsquo;Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors\u0026rsquo; (2019) 54(11) Bone Marrow Transplantation 1780\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eT K Chan and G L Tipoe, \u0026lsquo;The Policy Statement of the American Academy of Pediatrics \u0026ndash; Children as Hematopoietic Stem Cell Donors \u0026ndash; A Proposal of Modifications for Application in the UK\u0026rsquo; (2013) 14 BMC Medical Ethics 43.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003e Lori Wiener et al, \u0026lsquo;Transplant Center Practices for Psychosocial Assessment and Management of Pediatric Hematopoietic Stem Cell Donors\u0026rsquo; (2019) 54(11) Bone Marrow Transplantation 1780; American Academy of Pediatrics Committee on Bioethics, \u0026lsquo;Children as Hematopoietic Stem Cell Donors\u0026rsquo; (2010) 125(2) Pediatrics 392.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003eT K Chan and G L Tipoe, \u0026lsquo;The Policy Statement of the American Academy of Pediatrics \u0026ndash; Children as Hematopoietic Stem Cell Donors \u0026ndash; A Proposal of Modifications for Application in the UK\u0026rsquo; (2013) 14 BMC Medical Ethics 43; S N Then, I H Kerridge and M Marks, \u0026lsquo;Children as Haematopoietic Stem Cell Donors: Ethically Challenging and Legally Complex\u0026rsquo; (2018) 208(8) Medical Journal of Australia 351.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e\u003cem\u003e Nina Worel et al, \u0026lsquo;Suitability of Haematopoietic Cell Donors: Updated Consensus Recommendations from the WBMT Standing Committee on Donor Issues\u0026rsquo; (2022) 9(8) The Lancet Haematology e605, e610.\u003c/em\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"University of Malaya","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"minor donors, paediatric HSCT, informed assent, donor advocacy, medical ethics","lastPublishedDoi":"10.21203/rs.3.rs-9613459/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9613459/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e The use of minor siblings as haematopoietic stem cell (HSC) donors raises profound ethical and legal concerns, particularly in jurisdictions where regulatory guidance is absent. In Malaysia, no specific statutory framework governs the assessment, consent process, or protection of minor donors in paediatric transplantation. This article examines how healthcare professionals navigate this normative vacuum. Drawing on qualitative interviews with fifteen transplant clinicians, nurses, and coordinators at a Malaysian public university hospital, the study identifies five recurring themes: biologically driven donor selection, informal and inconsistent assent practices, constrained voluntariness within family structures, institutional reliance on discretion, and professional support for regulatory reform. While participants expressed ethical awareness, donor protection mechanisms were found to be uneven and largely undocumented. Using a child-rights-based bioethical framework grounded in the Convention on the Rights of the Child and relational autonomy theory, the article argues that current practice produces a form of \u0026ldquo;ethical drift\u0026rdquo; in which donor welfare becomes secondary to recipient survival. The Malaysian case illustrates how regulatory absence transforms ethical safeguards into discretionary acts rather than enforceable standards. The article concludes that structured national guidance, including mandatory assent protocols and independent donor advocacy, represents not merely policy reform but a moral imperative in paediatric transplantation governance.\u003c/p\u003e","manuscriptTitle":"When Minors Become Donors: Ethical and Legal Gaps in Malaysian Paediatric STEM Cell Transplantation","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-05-12 12:24:52","doi":"10.21203/rs.3.rs-9613459/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6ed7e312-2c8f-4565-b13f-983bf5a076e4","owner":[],"postedDate":"May 12th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":68007640,"name":"Medical Ethics"},{"id":68007641,"name":"Pediatrics"}],"tags":[],"updatedAt":"2026-05-12T12:24:58+00:00","versionOfRecord":[],"versionCreatedAt":"2026-05-12 12:24:52","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9613459","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9613459","identity":"rs-9613459","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}