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一个用于教育研究人员有关生物伦理和生物样本库的基于网络的平台。

A Web-Based Platform for Educating Researchers About Bioethics and Biobanking.

作者信息

Sehovic Ivana, Gwede Clement K, Meade Cathy D, Sodeke Stephen, Pentz Rebecca, Quinn Gwendolyn P

机构信息

Department of Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL, USA.

Department of Oncologic Sciences, Morsani College of Medicine, University of South Florida, 12902 Magnolia Drive, MRC CANCONT, Tampa, FL, 33612, USA.

出版信息

J Cancer Educ. 2016 Jun;31(2):397-404. doi: 10.1007/s13187-015-0812-5.

Abstract

Participation in biobanking among individuals with familial risk for hereditary cancer (IFRs) and underserved/minority populations is vital for biobanking research. To address gaps in researcher knowledge regarding ethical concerns of these populations, we developed a web-based curriculum. Based on formative research and expert panel assessments, a curriculum and website was developed in an integrative, systematic manner. Researchers were recruited to evaluate the curriculum. Public health graduate students were recruited to pilot test the curriculum. All 14 researchers agreed the curriculum was easy to understand, adequately addressed the domains, and contained appropriate post-test questions. The majority evaluated the dialgoue animations as interesting and valuable. Twenty-two graduate students completed the curriculum, and 77 % improved their overall test score. A web-based curriculum is an acceptable and effective way to provide information to researchers about vulnerable populations' biobanking concerns. Future goals are to incorporate the curriculum with larger organizations.

摘要

对于有遗传性癌症家族风险的个体(IFRs)以及服务不足/少数群体而言,参与生物样本库建设对生物样本库研究至关重要。为解决研究人员在这些人群伦理问题方面的知识缺口,我们开发了一个基于网络的课程。基于形成性研究和专家小组评估,以综合、系统的方式开发了课程及网站。招募研究人员对课程进行评估。招募公共卫生专业研究生对课程进行试点测试。所有14名研究人员均认为该课程易于理解,充分涵盖了各个领域,且包含恰当的课后测试问题。大多数人认为对话动画有趣且有价值。22名研究生完成了该课程,77%的人提高了总体测试成绩。基于网络的课程是向研究人员提供有关弱势群体生物样本库问题信息的一种可接受且有效的方式。未来的目标是将该课程纳入更大的组织。

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本文引用的文献

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Genetic research participation in a young adult community sample.年轻成人社区样本中的基因研究参与情况。
J Community Genet. 2014 Oct;5(4):363-75. doi: 10.1007/s12687-014-0191-3. Epub 2014 Jun 20.
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Biobanking: the foundation of personalized medicine.生物库:个性化医疗的基础。
Curr Opin Oncol. 2011 Jan;23(1):112-9. doi: 10.1097/CCO.0b013e32834161b8.
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Breast cancer genomics based on biobanks.基于生物样本库的乳腺癌基因组学
Methods Mol Biol. 2011;675:375-85. doi: 10.1007/978-1-59745-423-0_23.

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