Massimo L
Department of Pediatric Hematology and Oncology-G.Gaslini Children's Research Hospital, Genova-Italy.
Bone Marrow Transplant. 1996 Nov;18 Suppl 2:8-12.
The medical staff caring for children with hematological or oncological diseases is often faced with delicate ethical and, at times, legal problems. Although many of these are common to other branches of pediatrics where patients are children lacking decision-making capacity, others, such as bone marrow transplantation (BMT), are peculiar to this specialty. This is a vanguard treatment for a wide range of diseases that are either incurable or resistant to conventional therapies. If the patient does not have a related donor, ethical and legal problems can occur: profound emotional dilemmas arise both because of the fretful search for a donor and because of the limited period the patient can be transplanted with good expectations of success. National and International Registries are linked to all BMT Units for the identification of compatible donors with the recipient. Hospitals hosting a BMT Unit must fulfill several requirements which are crucial to guaranteeing the best results when faced with the complexity and aggressiveness of transplantation and possible complications, such as a blood bank, an infectious diseases department, a rehabilitation unit, the availability of consultants, as well as playworkers, teachers, psychologists and social workers. Any trial carried out in a Center without sufficient experience, simply pleading the concept of "last hope" is not ethical, even considering possible late effects and sequelae. For allogeneic bone marrow transplantation it is necessary to obtain both the Consent of the donor and the Consent of parents of the recipient. Often the donor is a child sibling of the patient, lacking decision-making capacity as well. Information to parents of both children must be detailed. In reality, there are practically no risks for the child donor and, if any, they are linked to the general anaesthesia. The text of the Informed Consent is usually deliberated and accepted in advance by the Ethics Committee of the Institution where the patient is followed. Voluntary donor's Consent is required at different steps: at the entry in the Registry, when typing of major histocompatibility complex, at bone marrow harvesting under general anaesthesia. In Italy, Article No. 3, Law No. 107 of May 4, 1990 allows parents or legal guardians to consent to the bone marrow donation of a minor.
照顾患有血液学或肿瘤性疾病儿童的医护人员常常面临微妙的伦理问题，有时还会遇到法律问题。尽管其中许多问题在其他儿科分支中也很常见，因为这些分支的患者是缺乏决策能力的儿童，但其他问题，如骨髓移植（BMT），则是该专业所特有的。这是一种针对多种无法治愈或对传统疗法耐药的疾病的前沿治疗方法。如果患者没有相关供体，就可能出现伦理和法律问题：由于寻找供体的焦虑以及患者能够成功移植的预期期限有限，会引发深刻的情感困境。国家和国际登记处与所有骨髓移植单位相连，以识别与受者匹配的供体。设有骨髓移植单位的医院必须满足多项要求，这些要求对于在面对移植的复杂性和侵袭性以及可能的并发症（如血库、传染病科、康复单位、顾问的可用性，以及游戏工作者、教师、心理学家和社会工作者）时保证最佳结果至关重要。在一个没有足够经验的中心进行任何试验，仅仅以“最后希望”的概念为由是不道德的，即使考虑到可能的晚期效应和后遗症。对于异基因骨髓移植，必须获得供体的同意以及受者父母的同意。通常供体是患者的儿童兄弟姐妹，也缺乏决策能力。必须向两个孩子的父母详细说明情况。实际上，儿童供体几乎没有风险，如果有任何风险，也与全身麻醉有关。知情同意书的文本通常由跟踪患者的机构的伦理委员会预先审议并接受。在不同阶段需要自愿供体的同意：在进入登记处时、进行主要组织相容性复合体分型时、在全身麻醉下采集骨髓时。在意大利，1990年5月4日第107号法律第3条允许父母或法定监护人同意未成年人捐献骨髓。
