Relationships of Rescue and a Child’s Welfare

Funded Projects from 2012 to 2019

A child is brought to the hospital, pale and weak. The diagnosis: acute lymphoblastic leukemia – a type of white blood cell cancer. It could also be another form of leukemia or a serious blood-forming disorder. The parents are desperate, as these illnesses are fatal if left untreated. Initial chemotherapy has failed. Only a bone marrow donation and transplantation of the blood-forming stem cells from the marrow could prevent the child’s death. If the transplantation is successful, the sick child may recover completely. A healthy sibling could be a potential donor, as siblings are more likely to share nearly identical tissue markers compared to unrelated donors.

This scenario plays out several hundred times a year in Germany. Sibling bone marrow transplantation is an established medical practice. However, it clearly raises numerous ethical questions:
Do parents have the moral right to consent to bone marrow donation or peripheral blood stem cell collection from their child, thereby making decisions about the child’s body in this way? This procedure involves an intervention in the body of a healthy child. Can the potential donor child’s interest be considered, particularly in relation to enabling the survival of their sick sibling by donating tissue? Does the healthy sibling have a moral duty to donate? Or does the donation contradict the child’s welfare? What does "a child’s welfare" mean in this context? How do affected families, including all members—donor child, recipient child, other siblings, and parents—experience the decision-making process and its challenges? What narrative emerges from this experience?

Certain diseases can be treated with hematopoietic stem cell transplantation, yet this "gift" of bodily material involves a fundamental legal and ethical conflict: the welfare of one sibling is not equivalent to the welfare of the other. The intervention necessary for bone marrow or peripheral blood stem cell donation lacks medical indication for the donor child. The need for the procedure is solely determined by the sibling who requires the cells. Examining the ethical dimensions of this triangular relationship can help clarify how children are, and should be, treated, as well as the roles of families and medical care in this context.

To explore these questions and more, we have planned and conducted a philosophical and empirical-ethical research project.

Click here for results.

Click here for publications.