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开发一门关于生物样本库实践的伦理、法律和社会问题的短期课程——南非的一项参与式行动研究

Developing a Short Course on the Ethical, Legal, and Social Issues of Biobanking Practice-A Participatory Action Research Study in South Africa.

作者信息

Singh Shenuka

机构信息

School of Health Sciences, Discipline of Dentistry, University of KwaZulu-Natal, Durban, South Africa.

出版信息

Biopreserv Biobank. 2024 Dec;22(6):563-567. doi: 10.1089/bio.2023.0165. Epub 2024 Jul 8.

Abstract

There is a paucity of available training opportunities on the ethical, legal, and social issues (ELSI) of biobanking in South Africa and other low- and middle-income countries. For this purpose, an online short course was developed on the ELSI of biobanking practice. This study aimed to review the short course to determine its relevance for identified stakeholders in biobanking practice in South Africa. This in-depth exploratory study was conducted using a qualitative approach. Two groups of volunteers were purposively identified for the review of the course. Group 1 (Biobanking group, = 11) comprised researchers, biobankers, postgraduate students in biobanking research, and research ethics committee members. Group 2 (Curriculum group, = 10) comprised academics with expertise in curriculum development and review who were invited to participate in the study. A separate online open-ended questionnaire was used to collect data from each group. Both questionnaires focused on the description of the module structure and coherence. In addition, participants in Group 2 were asked to comment on the assessment strategy used. Thematic analysis was conducted on the collected data. The following themes were identified as strengths and shortcomings of the developed course and suggestions to improve both the content and delivery of the course. Participants were generally satisfied with the course design and structure. The module content was seen as being clear and aligned with the learning objectives. While the course structure was seen as easy to follow, some respondents did express difficulty in navigating through the modules while others experienced varying online technical problems. The general opinion was that the assessment strategy was consistent with the course aim and objectives. Study participants responded positively to this course and provided constructive criticism to improve the educational offering.

摘要

在南非以及其他低收入和中等收入国家,关于生物样本库伦理、法律和社会问题(ELSI)的培训机会匮乏。为此,开发了一门关于生物样本库实践中ELSI的在线短期课程。本研究旨在对该短期课程进行评估,以确定其对南非生物样本库实践中已确定的利益相关者的相关性。这项深入的探索性研究采用了定性研究方法。为评估该课程,特意挑选了两组志愿者。第一组(生物样本库组,n = 11)包括研究人员、生物样本库管理人员、生物样本库研究方向的研究生以及研究伦理委员会成员。第二组(课程组,n = 10)由在课程开发和评估方面具有专业知识的学者组成,他们受邀参与该研究。使用单独的在线开放式问卷从每组收集数据。两份问卷都聚焦于模块结构和连贯性的描述。此外,还要求第二组的参与者对所采用的评估策略发表意见。对收集到的数据进行了主题分析。以下主题被确定为所开发课程的优点和缺点,以及改进课程内容和授课方式的建议。参与者总体上对课程设计和结构感到满意。模块内容清晰,与学习目标一致。虽然课程结构易于理解,但一些受访者表示在浏览模块时遇到困难,另一些人则遇到了各种在线技术问题。普遍的看法是评估策略与课程目标一致。研究参与者对该课程给予了积极回应,并提供了建设性的批评意见,以改进这一教育课程。

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本文引用的文献

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Biobanking from the patient perspective.患者视角下的生物样本库。
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