Ethical Considerations

  • Jonna D. Clark
  • Denise M. Dudzinski
Reference work entry
Part of the Organ and Tissue Transplantation book series (OTT)


Over the past 60 years, incredible progress has been achieved in pediatric organ transplantation. Some children, who historically would have died with end stage organ failure, are living for decades. Yet, imbedded in this progress are numerous ethical considerations. The discrepancy between the supply and demand of transplantable organs persists, and questions of justice remain prevalent. Transplant professionals are faced with a moral tension, balancing their duty to provide the best medical care for each of their patients, knowing that their decisions directly impact outcomes for other unknown patients. When one child receives an organ, another child goes without and is faced with the risks, morbidities, and mortality associated with longer wait times. Can the supply of organs be increased without causing harm to children and their families? How should parental living organ donors be protected when they are desperate to save the lives of their dying children? How should scarce organs be allocated and who gets to decide? Who is eligible for transplant and what conditions, if any, preclude the opportunity for pediatric transplant? Should transplant professionals ever be obligated to compel a life-saving organ transplant against parental wishes? How do outcome measures and quality assessments of transplant centers impact common practices and decisions? In the following chapter, through a series of case based discussions, common ethical frameworks are used to illuminate important considerations required to address these difficult questions.


Pediatric transplant ethics Organ donation Organ allocation Dead donor rule Organ donation after circulatory determination of death (DCDD) Organ donation after neurological determination of death (DNDD) Living organ donation Transplant eligibility Children with disabilities Parental refusal of treatment Rule of rescue Justice Equity Efficiency Respect for persons Medical best interest 


  1. Alexander S (1962) They decide who live, who dies: medical miracle puts moral burden on small committee. Life 53:102–125Google Scholar
  2. American Academy of Pediatrics: Committee on Bioethics (2013) Ethical controversies in organ donation after circulatory death. Pediatrics 131:1021–1026CrossRefGoogle Scholar
  3. Aulisio MP, DeVita M, Luebke D (2007) Taking values seriously: ethical challenges in organ donation and transplantation for critical care professionals. Crit Care Med 35:S95–S101CrossRefPubMedGoogle Scholar
  4. Beecher HK (1968) A definition of irreversible coma. JAMA 205:337–340CrossRefGoogle Scholar
  5. Bernat JL (2010) How the distinction between “irreversible” and “permanent” illuminates circulatory-respiratory death determination. J Med Phil 35:242–255CrossRefGoogle Scholar
  6. Bernat JL (2013) Life or death for the dead-donor rule? NEJM 369:1289–1291CrossRefPubMedGoogle Scholar
  7. Bilhartz JL, Lopez MJ, Magee JC et al (2015) Assessing allocation of responsibility for health management in pediatric liver transplant recipients. Pediatr Transplant 19:538–546CrossRefPubMedPubMedCentralGoogle Scholar
  8. Brahams D (1996) UK court upholds parents’ decision to stop child’s surgery. Lancet 348:1236CrossRefPubMedGoogle Scholar
  9. Breierley J, Larcher V (2011) Organ donation from children: time for legal, ethical and cultural change. Acta Paediatr 100:1175–1179CrossRefGoogle Scholar
  10. Careddu L, Zanfi C, Pantaleo A et al (2015) Combined heart-liver transplantation: a single-center experience. Transplant Int 28:828–834CrossRefGoogle Scholar
  11. Coates J (2000) When do parents have the right to refuse medical treatment on behalf of their children? NZ Med J 113:297Google Scholar
  12. Connelly J, Pilch N, Oliver M et al (2015) Prediction of medication non-adherence and associated outcomes in pediatric kidney transplant recipients. Pediatr Transplant 19:555–562CrossRefPubMedGoogle Scholar
  13. Consolo HK, Wigmore SJ (2014) Ethical and legal issues associated with organ donation and transplantation. Surgery 32:333–337Google Scholar
  14. Cronin DC, Squires J, Squires R et al (2013) Parental refusal of a liver transplant for a child with biliary atresia. Pediatrics 131(1):141–146CrossRefPubMedGoogle Scholar
  15. Crowley-Makota M, Siegler M, Cronin D (2004) Long-term quality of life issues among adult-to-pediatric living liver donors: a qualitative exploration. Am J Transplant 4:744–750CrossRefGoogle Scholar
  16. de Groot Y, Lingsma HF, Bakker J et al (2012) External validation of a prognostic model predicting time of death after withdrawal of life support in neurocritical patients. Crit Care Med 40:233–238CrossRefPubMedGoogle Scholar
  17. deSante J, Caplan A, Hippen B et al (2014) Was Sarah Murnaghan treated justly? Pediatrics 134:155–162CrossRefPubMedGoogle Scholar
  18. Diekema D (2004) Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theoret Med 25:243–264CrossRefGoogle Scholar
  19. Downie J (1994) A choice for K’alia: child protection and first nations children. Health Law J 2:99–120PubMedGoogle Scholar
  20. Dyer C (1996) Mother wins right to refuse treatment for her child. BMJ 313:1101CrossRefPubMedGoogle Scholar
  21. Erim Y, Beckmann M, Kroencke S et al (2012) Influence of kinship on donors’ mental burden in living donor liver transplantation. Liver Transpl 18:901–906CrossRefPubMedGoogle Scholar
  22. Feier FH, Miura IK, Foneseca EA et al (2014) Successful domino liver transplantation in maple syrup urine disease using a living related living donor. Braz J Med Biol Res 47:522–526CrossRefPubMedPubMedCentralGoogle Scholar
  23. Feng S, Ekong U, Lobrtitto S et al (2012) Complete immunosuppression withdrawal and subsequent allograft function among pediatric recipients of parental living donor liver transplants. JAMA 307:282–293CrossRefGoogle Scholar
  24. Forsberg A, Nilsson M, Krantz M et al (2004) The essence of living parental liver donation- donors’ lived experiences of donation to their children. Pediatr Transplant 8:372–380CrossRefPubMedGoogle Scholar
  25. Fowler A, Freiberger D, Moonan M (2015) Palliative and end-of-life care in pediatric solid organ transplantation. Pediatr Transplant 19:11–17CrossRefPubMedGoogle Scholar
  26. Fox R, Swazey J (1998) Leaving the field. In: Caplan A, Coehlho D (eds) The ethics of organ transplants: the current debate. Prometheus Books, New YorkGoogle Scholar
  27. Grenvik A (1988) Ethical dilemmas in organ donation and transplantation. Crit Care Med 16:1012–1018CrossRefPubMedGoogle Scholar
  28. Gries C, White D, Truog R et al (2013) An official American Thoracic Society/International Society for Heart and Lung Transplantation/ Society of Critical Care Medicine/Association of Organ and Procurement Organizations/United Network of Organ Sharing Statement: ethical and policy considerations in organ donation after circulatory determination of death. Am J Resp Crit Care Med 188:103–109CrossRefPubMedGoogle Scholar
  29. Griffin KJ, Elkin TD (2001) Non-adherence in pediatric transplantation: a review of the existing literature. Pediatr Transplant 5:246–249CrossRefPubMedGoogle Scholar
  30. Hsu EK, Shaffer M, Bradford M et al (2015) Heterogeneity and disparities in the use of exception scores in pediatric liver allocation. Am J Transplant 15:436–444CrossRefPubMedGoogle Scholar
  31. Jonsen AR (2007) The God squad and the origins of transplantation ethics and policy. J Law Med Ethics 35:238–240CrossRefPubMedGoogle Scholar
  32. Jonson AR (1986) Bentham in a box: technology assessment and health care allocation. Law Med Health Care 14:172–174CrossRefGoogle Scholar
  33. Keller EJ, Kwo PY, Helft P (2014) Ethical considerations surrounding survival benefit-based liver allocation. Liver Transpl 20:140–146CrossRefPubMedGoogle Scholar
  34. Kelley M, Unguru Y, Myers GD et al (2012) An 8-year old foster child with behavioral problems who needs a bone marrow transplant. Pediatrics 130:936–940CrossRefPubMedGoogle Scholar
  35. Khan M, Zhang W, Taylor R et al (2015) Survival in pediatric lung transplantation: the effect of center volume and expertise. J Heart Lung Transpl 34:1073–1081CrossRefGoogle Scholar
  36. Kohn R, Rubenfeld G, Levy M et al (2011) Rule of rescue or the good of many? An analysis of physicians’ and nurses’ preferences for allocating ICU beds. Intens Care Med 37:1210–1217CrossRefGoogle Scholar
  37. Lefkowitz DS, Fitzgerald CJ, Zelikovsky N et al (2014) Best practices in the pediatric pretransplant psychosocial evaluation. Pediatr Transplant 18:327–335CrossRefPubMedGoogle Scholar
  38. Marin-Gomez LM, Tinoco-Gonzalez J, Alamo-Martinez JM et al (2014) Impact of the learning curve on the outcome of domino liver transplantation. Transplant Proc 46:3092–3094CrossRefPubMedGoogle Scholar
  39. Martin DE, Nakagawa TA, Siebelink MJ et al (2015) Pediatric deceased donation – a report of the transplantation society meeting in Geneva. Transplantation 00:1–7Google Scholar
  40. Matheny AH, Trotochaud K, Kinlaw K et al (2009) Policies on donation after cardiac death at children’s hospitals: a mixed methods analysis of variation. JAMA 301:1902–1908CrossRefGoogle Scholar
  41. Matsunami M, Ishiguro A, Fukuda A et al (2015) Successful living domino liver transplantation in a child with protein C deficiency. Pediatr Transplant 19:E70–E74CrossRefPubMedGoogle Scholar
  42. McDougall RJ, Notini L (2013) Overriding parents’ medical decisions for their children: a systematic review of normative literature. J Med Ethics 0:1–5Google Scholar
  43. McKie J, Richardson J (2003) The rule of rescue. Soc Sci Med 56:2407–2419CrossRefPubMedGoogle Scholar
  44. Miller FG, Truog RD (2008) Rethinking the ethics of vital organ donations. Hastings Cent Rep 38:38–46CrossRefPubMedGoogle Scholar
  45. Morrissey PE (2012) The case for kidney donation before end-of-life care. Am J Bioeth 12:1–8CrossRefPubMedGoogle Scholar
  46. Moseley KL, Kershaw D (2012) African American and White disparities in pediatric kidney transplantation in the United States. Camb Q Healthcare Ethics 21:353–365CrossRefGoogle Scholar
  47. Munshi L, Dhanani S, Shemie S et al (2015) Predicting time to death after withdrawal of life-sustaining therapy. Intens Care Med 41:1014–1028CrossRefGoogle Scholar
  48. Murray JS, Tu WH, Albers JB et al (1962) A community hemodialysis center for the treatment of chronic uremia. Trans Am Soc Artif Intern Organs 8:315–319CrossRefPubMedGoogle Scholar
  49. Naim MY, Hoehn S, Hasz R et al (2008) The Children’s Hospital of Philadelphia’s experience with donation after cardiac death. Crit Care Med 36:1729–1733CrossRefPubMedGoogle Scholar
  50. Nijagal A, Fleck S, Hills NK et al (2012) Decreased risk of graft failure with maternal liver transplantation in patients with biliary atresia. Am J Transplant 12:409–419CrossRefPubMedGoogle Scholar
  51. OPTN/UNOS Ethics Committee (2015) Ethical principles to be considered in the allocation of human organs. Accessed 28 July 2015
  52. OPTN/UNOS Ethics Committee and Pediatric Transplant Committee (2014) Ethical principles of pediatric organ allocation. Accessed 28 July 2015
  53. Osborne M, Evans T (1994) Allocation of resources in intensive care: a transatlantic perspective. Lancet 343: 778–780CrossRefPubMedGoogle Scholar
  54. Panocchia N, Bossola M, Vivanti G (2010) Transplantation and mental retardation: what is the meaning of discrimination? Am J Transplant 10:727–730CrossRefPubMedGoogle Scholar
  55. Popescu I, Dima S (2012) Domino liver transplantation: how far can we push the paradigm? Liver Transpl 18:22–28CrossRefPubMedGoogle Scholar
  56. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981) Defining death: a report on the medical, legal and ethical issues in the determination of death. US Government Printing Office, Washington, DCGoogle Scholar
  57. Rady M, Verheijide JL (2012) Autoresuscitation and determining circulatory-respiratory death in clinical practice for organ donation. Crit Care Med 40:1655–1656PubMedGoogle Scholar
  58. Rana A, Pallister Z, Halazun K et al (2015) Pediatric liver transplant center volume and the likelihood of transplantation. Pediatrics 136:e99–e107CrossRefPubMedGoogle Scholar
  59. Reding R (2008) Living donor liver transplantation for children in highly urgent life-threatening situations. Pediatr Transplant 12:261–262CrossRefPubMedGoogle Scholar
  60. Richards CT, Crawly LVM, Magnus D (2009) Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: inconsistencies in standards across major pediatric transplant centers. Pediatr Transplant 13:843–850CrossRefPubMedGoogle Scholar
  61. Robertson JA (1999) The dead donor rule. Hastings Cent Rep 29:6–14CrossRefPubMedGoogle Scholar
  62. Rodriguez-Arias D, Smith MJ, Lazar NM (2011) Donation after circulatory death: burying the dead donor rule. Am J Bioethics 11:36–43CrossRefGoogle Scholar
  63. Ross LF (1998) Children, families, and health care decision making. Oxford University Press, New YorkGoogle Scholar
  64. Ross LF, Thistlethwaite JR, American Academy of Pediatrics Committee on Bioethics (2008) Minors as living solid-organ donors. Pediatrics 122:454–461CrossRefPubMedGoogle Scholar
  65. Sarnaik A, Clark J, Meert K et al (2013) Views of pediatric intensive care physicians on the ethics of organ donation after cardiac death. Crit Care Med 41:1733–1744CrossRefPubMedGoogle Scholar
  66. Shapiro C (2005) Organ transplantation in infants and children- necessity or choice: the case of K’aila Paulette. Pediatr Nurs 31:121–122PubMedGoogle Scholar
  67. Shemie SD, Hornby L, Baker A et al (2014) International guideline development for the determination of death. Intens Care Med 40:788–797CrossRefGoogle Scholar
  68. Sheth KN, Nutter T, Stein D et al (2012) Autoresuscitation after asystole in patients being considered for organ donation. Crit Care Med 40:158–161CrossRefPubMedGoogle Scholar
  69. Shore PM, Huang R, Roy L et al (2012) Development of a bedside tool to predict time to death after withdrawal of life-sustaining therapies in infants and children. Pediatr Crit Care Med 13:415–422CrossRefPubMedGoogle Scholar
  70. Spital A (2005) More on parental living liver donation for children with fulminant hepatic failure: addressing concerns about competing interests, coercion, consent, and balancing acts. Am J Transplant 5:2619–2622CrossRefPubMedGoogle Scholar
  71. Stiers J, Aguayo C, Siatta A et al (2015) Potential and actual neonatal organ and tissue donation after circulatory determination of death. JAMA Pediatr 169:639–645CrossRefPubMedGoogle Scholar
  72. Strong RW, Lynch SV (1998) Ethical issues in living related donor liver transplantation. In: Caplan A, Coelho D (eds) The ethics of organ transplants: the current debate. Prometheus Books, New YorkGoogle Scholar
  73. Superina RA, Harrison C, Alonso EM et al (1999) Ethical issues in pediatric liver transplantation. Transplant Proc 31:1342–1344CrossRefPubMedGoogle Scholar
  74. Thomas E, Brahall S, Herington J et al (2014) Live liver donation, ethics and practitioners: ‘I am between the two and if I do not feel comfortable about the situation, I cannot proceed’. J Med Ethics 40:157–162CrossRefPubMedGoogle Scholar
  75. USA Today (2013) Disabled NJ girl thrives, inspires after transplant. Accessed 8 Mar 2015
  76. Toker A, Salzar L (2012) Pediatric liver transplantation- ethical dilemmas in a disabled patient. Pediatr Transplant 16:E257–E260CrossRefPubMedGoogle Scholar
  77. Truog R, Miller F (2008) The dead donor rule and organ transplantation. NEJM 359:674–675CrossRefPubMedGoogle Scholar
  78. Truog R, Robinson W (2003) Role of brain death and the dead donor rule in the ethics of organ transplantation. Crit Care Med 31:2391–2396CrossRefPubMedGoogle Scholar
  79. Truog R, Miller F, Halpern SD (2013) The dead-donor rule and the future of organ donation. NEJM 369:1287–1289CrossRefPubMedGoogle Scholar
  80. United Nations General Assembly: Convention on the Rights of Persons with Disabilities (2006) Final report of the Ad Hoc Committee on a comprehensive and integral international converntion on the protection and promotion of the righsts and dignity of persons with disabilities. Accessed 8 Apr 2015
  81. United Network for Organ Sharing (UNOS) (2015) Transplant trends. Accessed 8 July 2015
  82. Van Dijk G, Hilhorst M, Rings E (2014) Liver, pancreas and small bowel transplantation: current ethical issues. Best Pract Res Clin Gastroenterol 28:281–292CrossRefPubMedGoogle Scholar
  83. Veatch RM (2015) Killing by organ procurement: brain based death and legal fictions. J Med Philos 40:289–311CrossRefPubMedGoogle Scholar
  84. Veatch RM, Ross LR (2015) Transplantation ethics, 2nd edn. Georgetown University Press, Washington, DCGoogle Scholar
  85. Ventura KA (2010) Ethical considerations in live liver donation to children. Progr Transplant 20:186–190CrossRefGoogle Scholar
  86. Wightman A, Young B, Bradford M et al (2014) Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatr Transplant 18:714–719CrossRefPubMedPubMedCentralGoogle Scholar
  87. Wind J, Snoejis M, Brugman C et al (2012) Prediction of time of death after withdrawal of life-sustaining treatment in potential donors after cardiac death. Crit Care Med 40:766–769CrossRefPubMedGoogle Scholar
  88. Workman JK, Myrick CW, Meyers L et al (2013) Pediatric organ donation and transplantation. Pediatrics 131:e1723–e1730CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Pediatric Critical Care Medicine, Treuman Katz Center for Pediatric Bioethics, Department of PediatricsUniversity of Washington School of Medicine, Seattle Children’s HospitalSeattleUSA
  2. 2.Department of Bioethics and HumanitiesUniversity of Washington School of MedicineSeattleUSA

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