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

BACKGROUND: 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. STUDY DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey.

OBJECTIVE: To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. DESIGN: Cross-sectional survey. STUDY POPULATION: Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. RESULTS: Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001). CONCLUSIONS: This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results.

Biospecimen repositories: are blood donors willing to participate?

BACKGROUND: Sponsored by the National Heart, Lung, and Blood Institute, the Retrovirus Epidemiology Donor Studies (REDS-I/-II) have conducted epidemiologic, laboratory, and survey research on volunteer blood donors. Some studies request additional permission to store biospecimens for future studies. The representativeness and applicability of studies performed using repositories may be reduced by low participation rates. STUDY DESIGN AND METHODS: Demographics from subjects consenting to participate in the 2007 REDS-II Leukocyte Antibodies Prevalence Study (LAPS) repository were compared to "study-only" subjects. Data from the 1998 REDS-I survey of donor opinion regarding storage and use of biospecimens were also explored. RESULTS: Overall, 91% of LAPS subjects agreed to participate in the repository. Odds of repository participation were lower among African American and Hispanic donors, 35- to 44-year-olds, donors who had not completed high school, and donors from one geographic location, regardless of other variables. Survey data from 1998 revealed that 97% of respondents approved of long-term storage of biospecimens, although only 87% indicated that they would personally participate. Many respondents would require notification or their permission be obtained before participation. Minority respondents would require permission or notification more often and were less certain they would personally participate in a repository. CONCLUSION: Blood donors are quite willing to participate in biospecimen repositories. Regional differences and lower odds of participation in the minority blood donor population may result in a reduced number of biospecimens available for study and a decreased ability to definitely answer specific research questions in these populations.

[Jehovah's Witnesses attitude towards hemocomponents and hemoderivatives]. / Testemunhas de jeová ante o uso de hemocomponentes e hemoderivados.

OBJECTIVE: To study extent of knowledge and acceptance of hemocomponents and hemoderivatives, fresh and stored, by Jehovah's Witnesses and also propose bioethical tools for any ethical and moral conflicts identified in their relationship with physicians and dentists. METHODS: A questionnaire was used to interview 150 Jehovah's Witnesses who attend "Salões do Reino" in the Distrito Federal, Brazil. The questionnaire was directed towards information on socio-demographic aspects related to the use (or not) of hemocomponents and hemoderivatives by those interviewed and also approach of healthcare professionals with patients of this belief. RESULTS: 74% believe that the use of blood causes more harm than benefits to health--refusal is essentially based on the Bible 96% do not support hemocomponents, but 76% support hemoderivatives in specific situations, showing that personal understandings do exist; 80% feel morally offended with use of stored blood and only 45% with fresh blood, confirming the religious interpretation that fresh products are in general more accepted; according to 83% of the interviewees dentists do not ask about patients' religion, whereas 71% of physicians do, showing little professional concern about this aspect. CONCLUSION: Jehovah's Witnesses are seen by their "moral outsiders" (here physicians and dentists) as the religious group that simply "does not use blood". Although, several blood treatments are nowadays permitted, it does not deprive them from a free conviction to refuse blood treatments. Their particular understandings frequently extend the list of blood prohibitions and, consequently, the number of moral conflicts, when considering that physicians and dentists usually do not ask about a patient's religion.

Testemunhas de jeová ante o uso de hemocomponentes e hemoderivados / Jehovah's Witnesses attitude towards hemocomponents and hemoderivatives

OBJETIVO: Estudar o grau de conhecimento e aceitação de hemocomponentes e hemoderivados, frescos e armazenados, pelas testemunhas de Jeová e propor ferramentas bioéticas para o enfrentamento de eventuais conflitos éticos e morais nas relações com médicos e dentistas. MÉTODOS: Aplicação de questionários a 150 testemunhas de Jeová que frequentam Salões do Reino no Distrito Federal, Brasil. Os questionários buscaram respostas a aspectos sociodemográficos relacionados à possível aceitação de hemocomponentes e hemoderivados pelos pesquisados, bem como a atitude dos profissionais de saúde ante à opção religiosa dos pacientes. RESULTADOS: Dos pesquisados: 74 por cento acreditam que usar sangue provoca mais malefícios do que benefícios à saúde (fundamentação essencialmente bíblica); 96 por cento não aceitam usar hemocomponentes, mas 76 por cento aceitam usar hemoderivados em situações específicas, demonstrando haver entendimentos particulares sobre o tema; 80 por cento se sentem moralmente ofendidos com o uso de sangue armazenado e apenas 45 por cento com sangue fresco, confirmando a interpretação religiosa de que produtos frescos são em geral mais aceitos; segundo 83 por cento dos pesquisados, seus dentistas não perguntaram a religião dos pacientes contra 71 por cento dos médicos, demonstrando pouca preocupação dos profissionais neste aspecto. CONCLUSÃO: As testemunhas de Jeová são vistas por seus "estranhos morais" (aqui, médicos e dentistas) como religiosos que simplesmente "não aceitam sangue". Todavia, diversos tratamentos sanguíneos são hoje aceitos, o que não impede, por livre convicção, a recusa no recebimento de qualquer deles. As interpretações particulares costumam ampliar o rol de proibições e de conflitos morais, já que médicos e dentistas, além de não considerar estas particularidades, também não perguntam a religião na anamnese.

OBJECTIVE: To study extent of knowledge and acceptance of hemocomponents and hemoderivatives, fresh and stored, by Jehovah's Witnesses and also propose bioethical tools for any ethical and moral conflicts identified in their relationship with physicians and dentists. METHODS: A questionnaire was used to interview 150 Jehovah's Witnesses who attend "Salões do Reino" in the Distrito Federal, Brazil. The questionnaire was directed towards information on socio-demographic aspects related to the use (or not ) of hemocomponents and hemoderivatives by those interviewed and also approach of healthcare professionals with patients of this belief. RESULTS: 74 percent believe that the use of blood causes more harm than benefits to health - refusal is essentially based on the Bible 96 percent do not support hemocomponents, but 76 percent support hemoderivatives in specific situations, showing that personal understandings do exist; 80 percent feel morally offended with use of stored blood and only 45 percent with fresh blood, confirming the religious interpretation that fresh products are in general more accepted; according to 83 percent of the interviewees dentists do not ask about patients' religion, whereas 71 percent of physicians do, showing little professional concern about this aspect. CONCLUSION: Jehovah's Witnesses are seen by their "moral outsiders" (here physicians and dentists) as the religious group that simply "does not use blood". Although, several blood treatments are nowadays permitted,. it does not deprive them from a free conviction to refuse blood treatments. Their particular understandings frequently extend the list of blood prohibitions and, consequently, the number of moral conflicts, when considering that physicians and dentists usually do not ask about a patient's religion.