title: Barriers to conceiving sibling donors for sickle cell disease: perspectives from patients and parents.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of General Internal Medicine, Mount Sinai School of Medicine, 1 Gustave Levy Place, New York City, NY 10029, USA. gj2008@columbia.edu
authors.forename: Gina A
authors.initials: GA
authors.lastname: Jae
authors.forename: Adam K
authors.initials: AK
authors.lastname: Lewkowitz
authors.forename: Joanna C
authors.initials: JC
authors.lastname: Yang
authors.forename: Liang
authors.initials: L
authors.lastname: Shen
authors.forename: Amal
authors.initials: A
authors.lastname: Rahman
authors.forename: Gustavo
authors.initials: G
authors.lastname: Del Toro
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000628:therapy*; D026688:Bioethical Issues; D020732:Cytogenetic Analysis; D005260:Female; D005307:Fertilization in Vitro / Q000191:economics* / Q000941:ethics; D007722:Health Knowledge, Attitudes, Practice; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects* / Q000191:economics; D006801:Humans; D008297:Male; D008875:Middle Aged; D011247:Pregnancy; D019836:Preimplantation Diagnosis / Q000941:ethics*; D012720:Severity of Illness Index; D035781:Siblings; D012923:Social Class; D014019:Tissue Donors / Q000941:ethics* / Q000600:supply & distribution; D055815:Young Adult