Jessica’s enthusiasm remains when she and her parents meet with Dr. Malone, the bone marrow transplant physician, and his team. Christian J. Vercler, MD, MA is the co-chair of the Pediatric Ethics Committee at C.S. A central question in this case is the ethical permissibility of using Jessica as a bone marrow donor in light of her seeming reticence and fear regarding anesthesia and pain. Children as Live Kidney Donors for Siblings, Shared Decision Making about IVF for Savior Siblings, Conflicts in Family-Centered Pediatric Care for Patients with Autism, Learning to Decide: Involving Children in their Health Care Decisions, We Got Your Back: Patient Advocacy Through Art. One remedy could be to appoint an independent adult advocate to meet alone with the prospective living donor child to investigate his or her concerns and then speak on his or her behalf. The self-image of unrelated bone marrow donors.

In this case, not allowing Jessica to donate could very likely worsen her future well-being and development. Taking Our Oath Seriously: Compassion for Patients, Physician Health Programs and the Social Contract, a procedure that confers no direct medical benefit to the child, Decision making/Patient and family centered care, Patient-clinician relationship/Patient, family-centered care, https://www.childrensmercy.org/Clinics_and_Services/Clinics_and_Departments/Hematology_Oncology_and_Bone_Marrow_Transplantation/News_and_Features/Donor_Advocacy_Program_Addresses__Conflicts_of_Interest_in_Bone_Marrow_Transplants/. However, for a procedure that confers no direct medical benefit to the child, respecting a child’s autonomy—obtaining a child’s assent or appropriately regarding his or her dissent or refusal—is generally thought to be of paramount ethical importance. Donor advocates can help to avoid the pitfall of overemphasizing Jessica’s concerns and fears about pain and discomfort, which could be as devastating as the pitfall of ignoring, neglecting, or underestimating her concerns and fears. In these cases, the donor might appear to be willing, but the scenario remains fraught with ethical issues, not the least of which is whether a child can truly assent to an invasive procedure from which he or she will derive no medical benefit. One set comes from their father and one from their mother, for a total of eight genes.

Jessica’s case easily meets three of the five criteria. It might, therefore, seem that parents would only permit their child to undergo a painful procedure when benefits outweigh risks. Gregor M, Timmermann J, eds. Bone-marrow harvesting is generally considered safe, but it is not without risks. Donating could also shield her from a potential repercussion of parental grief—the parents’ diminished abilities to care for a surviving child [6]. Mandy’s death thus could undermine the stability and support Jessica’s parents presently provide.

At eight years old, Jessica cannot be expected to fully comprehend the dire consequences that a decision not to donate would have on herself and those around her. When a donor can’t be found within a family, then a search is performed for an unrelated donor or cord blood. Accessed November 24, 2015. Motivations, experiences, and perspectives of bone marrow and peripheral blood stem cell donors: thematic synthesis of qualitative studies. Since Jessica is an integral part of her family, her ability to thrive comes through the contributions every member makes to the familial unit.

The fifth condition set by the AAPCB—parent consent and patient assent—bring us back to the original ethical dilemma in Jessica’s case [1]. Learn with the AMA about the provisions that pose a real threat to many physicians’ ability to deliver health care services to their patients. A person requires a bone marrow transplant when their blood is not healthy enough to support them or to fight an underlying disease. The HLA must be as closely matched as possible so that the transplant recipient’s body can ‘accept’ the new stem cells into their bone marrow.

During this conversation, it becomes clear to him that she has not fully understood what the donation would entail. Bone marrow harvesting, even in children, is considered safe with only slight risk [2].

For example, a sibling in need of an organ might be unlikely to receive a transplant otherwise. Some studies suggest that the loss of a sibling in childhood can adversely alter personality; hinder social development; and even lead to outcomes, such as fewer years of schooling, with negative impacts on adult life [4, 5]. Read the official call for the Meeting.

Bone marrow donation between siblings living in different families. Dr. Vercler is a practicing craniofacial surgeon. Some institutions already make standard practice of consulting independent advocates. Rare potential morbidities include pulmonary embolism, sickle cell crisis, and others [2].

Depending on the stage of AML, a bone marrow transplant confers between 30 … In this era of patient-centered care, a case like Jessica’s sparks a great deal of controversy because at first glance it is unclear whether, because of her age and familial pressure, she is capable of assenting voluntarily to an invasive procedure from which she derives no medical benefit. We generally accept the moral authority of a child’s parents, except in cases of abuse or neglect. Officials of the Manipal Hospital told Gulf News that it was common for adults to be donors in a bone marrow transplantation but very rare for a 3-year-old to be the donor for an elder sibling. It is like a factory.

Email : info@thechildren.com, autologous, which is a transplant using a person’s own (previously harvested) stem cells; and, allogeneic, which is a transplant using stem cells donated from someone else, Accessibility for patients with limited mobility, Where to go for your child’s health problem. Copyright 1995 - 2020 American Medical Association. The AMA Journal of Ethics, however, is an editorially independent scholarly publication of the AMA. The 8-year-old is a match, seems excited about the possibility of helping her sister, but when the physician talks to the 8-year-old, it becomes clear that she doesn’t really understand what being a living donor would entail. It’s not clear, however, how to consider those dynamics; we don’t know, for example, which relationships are close and which are strained, and even if we did, it would not be clear how our judgments about those relationships should be weighed in deciding whether and when it is just to ask Jessica to be a donor for Mandy. First, no adult matches are available to donate to the child needing the transplant.

A person requires a bone marrow transplant when their blood is not healthy enough to support them or to fight an underlying disease. The moral authority of parents is generally accepted due to their duties to both know and protect their children’s best interests. Download AMA Connect app for Everyone inherits two sets of chromosomes containing HLA genes, four genes per set. Some would be a direct result of experiencing sibling loss; the lifelong bond shared by two siblings is often crucial to a child’s social and personal development [4].

Changes in siblings after the death of a child from cancer.

Donating may also bring one a sense of personal satisfaction and accomplishment [8]. Sisters might be expected to have a tight bond, but open ethical questions can remain about how the relationship is assessed and by whom. A sibling donor fulfills and exceeds his or her familial obligation to care for a sibling. A sibling death in the family: common and consequential. Supporting youth grieving the dying or death of a sibling or parent: considerations for parents, professionals, and communities. The codes ensure uniform language for medical services and procedures, physicians tell a federal court in a brief, and other uses erode patient trust. Fundamentally, the ethical permissibility of using Jessica as a bone marrow donor turns on whether and how her personhood is valued and respected.


Mandy’s deterioration and subsequent death would, presumably, have serious negative emotional short- and long-term consequences for Jessica.

Medical, emotional, and psychological risk to the child donor must be minimal and reasonable in comparison to the benefit gained by the donor and recipient [1]. The philosopher Immanuel Kant expressed this general idea by suggesting that a person should never be used merely as a means to an end but must be treated as an end—that is, as valuable—in him- or herself [11]. Children’s Mercy Hospital in Kansas City, for instance, created a Donor Advocacy Program [10].

Basing such a critical decision on Jessica’s emotions or her limited comprehension could be far less ethically advisable than proceeding with a less than clearly autonomous assent.

In the case of a bone-marrow transplant, the procedure can confer a significant, 30- to 65-percent chance of survival, depending on the stage of the disease.

Jessica asks some questions, and Dr. Malone assures her that her bones and blood will make more marrow to replace what is removed. However, possible psychological sequelae—such as fear and posttraumatic stress [3]—pose additional moral concerns that are not easy to weigh. She seems concerned and anxious as she asks him whether it will hurt and about what could happen to her if she has the procedure, and she is visibly frightened about having to be put to sleep. The American Academy of Pediatrics Committee on Bioethics (AAPCOB) deems the use of a child bone marrow donor ethically appropriate when five conditions are met [1]. Room number : B 07.5350, Glen site

This is where taking a patient- and family-centered approach could be helpful.

Decision makers are burdened with great responsibility: their choice will have life-and-death consequences for another vulnerable child. Protecting Jessica, ultimately, comes down to ensuring that potentially harmful physical and psychological effects of the procedure are minimized and that her parents and caregivers respond to her fears and anxieties with compassion. Although minors cannot technically consent to medical interventions—parents do so on behalf of their children—we honor their opinions in the concept of, and in seeking, assent. Find the agenda, documents and more information about the WPS November 2020 Meeting. Jessica’s resulting level of understanding, however, should not necessarily guide Dr. Malone’s and Jessica’s and Mandy’s parents’ collaborative decision to allow the donation. Second, the bone marrow transplant must confer a reasonable benefit to the recipient, which can be assumed in this case. Camb Q Healthc Ethics. iPhone or The general anesthesia, as well as the harvesting procedure itself, however, can have adverse effects. Sometimes the only realistic match for a child in need of a bone-marrow transplant is a sibling.

The gratitude and affection her parents and sibling would shower on her might allow her to feel a sense of personal satisfaction and accomplishment similar to that reported in the aforementioned study.

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