Barriers to conceiving sibling donors for sickle cell disease: Perspectives from patients and parents

Objectives. The lack of matched sibling donors poses a significant barrier to utilizing hematopoietic cell transplantation (HCT), the only proven cure for children with sickle cell disease (SCD). Little is known about current patient and parent perspectives towards HCT for SCD. This study examines the perceived barriers of transplant, and the use of in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD), when there is no pre-existing sibling donor. Design. Semi-structured interviews were conducted with adult patients with SCD and parents of children with SCD in an urban medical center in the US. Transcribed data was analyzed using qualitative methods. Results. Of 23 participants, 17 reported having heard of HCT for SCD. Fewer knew of IVF or PGD as a means for conceiving an unaffected child (n =7) or to select a potential umbilical cord blood donor (n =1). The financial cost of IVF and PGD was perceived as a significant initial barrier to accessing these technologies, with the clinical risks of HCT and the ethical appropriateness of using PGD also identified as barriers. The value of informing families of these options was a recurring theme, even among respondents who personally disagreed with their application. Conclusion. The low utilization of curative strategies for SCD appears to be partly attributable to a lack of information about the technologies available to facilitate transplantation. Ethical reservations, while present, were not static and did not preclude patients' and parents' desire to be informed. We discuss the implications of these perceived barriers to the dissemination of advanced medical technologies for SCD.