Assessing women's knowledge and attitudes toward cord blood banking: policy and ethical implications for Jordan.

Abstract

Despite the global expansion of umbilical cord blood (CB) banking, little is known about public opinion and awareness, especially among Arab Muslim populations. CB banking raises policy questions about funding sustainability and quality standards, as well as ethical debates about profitability, informed consent, and medical justification. This study is the first of its kind in the Arab world, and Jordan has a unique, understudied, yet highly relevant setting, especially as a regional medical hub with advanced medical and health policy infrastructures. In addition, the first private and public CB banks are expected to open in 2016. The authors developed and administered, over a 5-month period, an anonymous survey to investigate public opinion and knowledge about CB banking in Jordan. The survey was administered to women in maternity outpatient clinic waiting rooms at five different hospitals. More than 75% of respondents indicated they knew nothing about CB banking in Jordan, and more than 50% had never heard of CB banking before. However, overall public opinion about CB storage is positive. Important factors related to public opinion were also identified, demonstrating that most women want more information on CB banking, especially from their obstetrician. This widespread lack of awareness is likely contributing to misinformation, lack of knowledge, and unfavorable perspectives toward CB donation and research. The results have important implications for the development of national and regional policies and educational campaigns on CB banking targeting both physicians and patients.