Psychosocial issues. Unanswered questions in the use of bone marrow transplantation for treatment of hemoglobinopathies.

Purpose: This article addresses some of the psychosocial issues of bone marrow transplantation for treatment of hemoglobinopathies. The central focus is on the importance of attending to the experiences of minority patients and their families. Findings of recent studies relative to issues of bone marrow donation provide some framework for this analysis.

Patients and methods: Unanswered questions are posed by hypothetical parents to raise critical questions and to highlight the importance of truly informed consent in shared decision making.

Conclusions: Recommendations for researchers and care-givers are for more personal contacts and dialogues with patients and families. There should also be involvement in grass roots activities, with attention to assessing the efficacy of bone marrow transplantation, as well as emphasizing minority representation in the process.