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Challenges that face the establishment of diabetes biobank in Jordan: a qualitative analysis of an online discussion forum

机译:约旦建立糖尿病生物库所面临的挑战:在线讨论论坛的定性分析

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摘要

Introduction: Diabetes is common in Jordan with a prevalence of about 13% of the population. Establishment of a diabetes biobank in Jordan could have an enormous impact on the management and prevention of the disease.Methods: In the current study, ethical challenges that might face the establishment of a biobank were examined by 28 researchers from the Middle East and North Africa region using an online discussion forum.Results: All participants agreed on the importance of the establishment of a diabetes biobank in Jordan. The possible challenges that were discussed included confidentiality and privacy, informed consent, specimen ownership and participants’ rights, data sharing, returning of research results and incidental findings, lack of legislations, and importance of social awareness and public engagements with biobanks.Conclusion: In conclusion, participants support the establishment of a diabetes biobank in Jordan; however, some ethical issues should be considered to ensure the success of the biobank.
机译:简介:糖尿病在约旦很常见,约占总人口的13%。在约旦建立糖尿病生物库可能会对疾病的管理和预防产生巨大影响。方法:在本研究中,由28位研究人员研究了建立生物库可能面临的道德挑战来自中东和北非地区的在线讨论论坛。结果:所有参与者都同意在约旦建立糖尿病生物库的重要性。讨论的可能挑战包括机密性和隐私,知情同意,标本所有权和参与者的权利,数据共享,研究结果和偶然发现的返还,缺乏立法以及社会意识和与生物银行的公众参与的重要性。结论:总而言之,参与者支持在约旦建立糖尿病生物库。但是,应考虑一些道德问题以确保生物库的成功。

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