Results
Key findings from philosophical and sociological studies on sibling donation
1. Philosophical
The understanding of what a child needs to live well and happily, and to what extent a child’s welfare must be considered in relation to parents, family, and society, is contentious and has changed significantly over time. For a long period, the term "welfare" was reserved for the success of adults' lives. In reference to children, terms such as “prospering” or “ward” were more commonly used. Nowadays, however, the concept of a child’s welfare is a standard part of family disputes, particularly in divorce cases, and is also central to debates in medical ethics. The concept of child welfare, as a legal term often used in the context of child endangerment, and the broader notion of children’s welfare touch on both the present and future in terms of time.
Focusing on the welfare of children has opened up its own research perspective, balancing rational criteria (norms and values) with empathy for the individuals involved. It mediates between lived practice and theoretical observation, between a specific topic and its narrative constitution. The interpretation of children's welfare is supported by the understanding that a child's welfare is always situated within generative relationships and social structures. To grasp the concept of children's welfare in its biographical, narrative, and normative dimensions, philosophical inquiry explores aspects such as the good life, justice, relationships, and temporality.
2. Empirical
Once a sibling was considered a suitable donor, most families we studied no longer searched for an unrelated donor. A family donor was seen as “luck” (like “winning the lottery”), which allowed them to attempt a rescue using intra-familial resources. This gave the family a sense of agency amidst feelings of helplessness and threat.
Parents, in particular, viewed blood stem cell transplantation from the "matching" sibling as a family duty and did not see it as a decision regarding their child’s stem cell donation. Parents described facing a dilemma: they had to care equally for both their sick and healthy children, which was practically impossible. Many felt a lack of control and great uncertainty. They suffered from not being able to fulfill their parental role of protecting and providing security for their children. They also feared the donor child might feel "used."
Donors reported feeling responsible for their sibling’s health and the success of the blood stem cell donation. Despite reassurances from both parents and medical staff that the child was not responsible for the outcome of the treatment, this sense of responsibility persisted, particularly in cases of failure. Some children carried this burden even years later.
The period of acute illness was described as a rupture and an extreme crisis. Families adapted to the situation with varying outcomes. Most families became closer, though two described their relationships as "broken," though not in cases where they had lost a child.
The availability of bodily material shaped family relationships. The "body" became a constitutive element in family dynamics. Families developed their own "narrative" around the blood stem cell transplantation process.
