PGD for HLA matching: preliminary psychological child outcome

Introduction: PGD (Preimplantation Genetic Diagnosis) combined with HLA (Human Leukocyte Antigen) matching is one of the recent applications in reproductive medicine which is used to select HLA compatible embryos in order to cure a severely affected sibling with a transplantation using haematopoietic stem cells from the newborn umbilical cord blood. PGD-HLA emerges numerous ethical and psychological questions.
Materials and methods: The number of children born after PGD-HLA is very scarce. In order to evaluate the psychological well-being of the child conceived after PGD-HLA, we visited 3 families spread over Europe and interviewed them about the initial motives to opt for this treatment, how the pregnancy/ treatment was experienced, the openness about this project towards family, friends and the PGD-HLA conceived child and how the PGD-HLA conceived child is experienced by the parents and sibling(s). The degree of contentment about the guidance of the fertility centre before, during and after the treatment was also addressed.
Results: All three children were too young (between 18-24 months) to participate in the interview. The parents informed the broader social circle about their project, the sibling(s) were also very aware of the fact that the youngest sibling is a compatible donor. In 2/3 of the families the PGD-HLA children will be informed about the nature of their conception once they start asking questions or can understand. One of the PGD-HLA children was born two weeks after his ill sibling deceased. In this family the PGD-HLA child was the only living child in the family. Because of this reason and because of the different socio-cultural background (Muslims) of this family they did not see the need to inform the child about the motives for his conception. In the two other cases additional bone marrow transplantations were necessary to cure the affected sibling. All parents stated they had had the desire to have another child and the PGD-HLA child was not only conceived to be the donor for his brother or sister. Moreover, all three children seemed very well integrated in their families and were raised and loved in the same way as their sibling(s) according to the parents. The mothers, told that any problems or inconveniences during the treatment/pregnancy faded as compared to what their ill child had to suffer and in one case the ill child was worried about the well-being of the PGD-HLA conceived sibling because additional transplants were necessary an it did not want her PGD-HLA sibling to suffer for her. All three families were content with the guidance/treatment from the hospital. Even the couple that had lost the child before the PGD-HLA conceived child was born was satisfied about the services of the centre since they were pregnant after the first attempt.
Conclusion: It is impossible to make solid conclusions on the basis of only 3 follow-up interviews. In the future, assessments of these children and their families on the basis of a multi-method approach (interviews, questionnaires, formal child assessment) are recommended. All 3 families had their own particular story introducing many psychological issues that can only be addressed in time. It is clear that with the birth of a PGD-HLA conceived child the medical issues and the coexisting psychological issues are not solved and a long journey with an insecure outcome seems to be ahead. In general, the PGD-HLA treatment did not seemed to adversely affect the psychological well-being of these 3 children so conceived.