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约旦大学生对生物库的看法。

Views of university students in Jordan towards Biobanking.

机构信息

Department of Physiology and Biochemistry, School of Medicine, The University of Jordan, Amman, Jordan.

School of Medicine, The University of Jordan, Amman, 11942, Jordan.

出版信息

BMC Med Ethics. 2021 Nov 13;22(1):152. doi: 10.1186/s12910-021-00719-y.

Abstract

BACKGROUND

Biobanks are considered primary means+ of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a cornerstone for their success.

AIMS

This study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan.

METHODOLOGY

An online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing the decision to participate.

RESULTS

Responses from 435 students revealed that 52.9% previously heard of biobanks. There was an overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, informed consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, the vagueness of the type of research performed on the biospecimens and the unavailability of general research results to the donor had a negative connotation. There was no clear agreement on the type of informed consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred the disposal of biospecimens and information when deciding to withdraw from participation.

CONCLUSION

There is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

摘要

背景

生物银行被认为是支持当代研究的主要手段,以便在公众接受和参与的基础上提供个性化和精确的诊断,这是其成功的基石。

目的

本研究旨在评估约旦大学生对生物医学研究和生物银行的知识、看法和态度。

方法

设计、开发并试点了一份在线问卷。它分为 5 个部分,包括与生物医学研究和生物银行问题以及影响参与决策的因素相关的问题。

结果

来自 435 名学生的回复显示,52.9%的人之前听说过生物银行。绝大多数人接受参与生物医学、遗传和生物银行研究。血液样本是最受欢迎的捐赠样本。保护隐私、在捐赠前获得知情同意、伦理委员会的批准以及对研究人员的信任是与参与意愿最相关的重要因素。另一方面,生物样本上进行的研究类型的模糊性以及捐赠者无法获得一般研究结果具有负面含义。学生对首选的知情同意类型没有明确的共识,但大多数人希望在决定退出参与时能联系并告知研究结果。学生在决定退出参与时也倾向于处理生物样本和信息。

结论

学生对参与生物医学研究和生物银行的热情很高,同时保留所有权利,这为约旦的美好未来带来了希望。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6f85/8590215/118fa11e4bad/12910_2021_719_Fig1_HTML.jpg

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