Ethical Issues in Glaucoma Genomic Research: Perspectives and Preferences of Potential Research Participants in Enugu, Southeast Nigeria.

IF 1.7 4区 哲学 Q2 ETHICS
Nkechinyere J Uche, Onochie I Okoye, Emmanuel R Ezeome
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引用次数: 0

Abstract

Genomic research is challenged by many ethical issues, especially in low-resource locations. To determine the views and perspectives of research participants regarding these ethical challenges, two hundred and eight potential research participants were interviewed. Views regarding basic genetic knowledge, return of research results and incidental findings and secondary data use were elicited. Overall, 87.5% of participants were aware of genomic research. About 95.7% of participants had poor basic genetic knowledge, while 15.4% had an understanding of the concept of genetic research. Most participants (92.3% and 82.2% respectively) expressed preference for return of research results and incidental findings. One hundred and forty-nine participants (71.6%) expressed reservation regarding future unspecified use of their blood sample and medical information while 76.4% expressed concern regarding data sharing with other researchers. Optimal consideration should be given to participants' preferences in the design of genomic research protocols.

青光眼基因组研究中的伦理问题:尼日利亚东南部埃努古潜在研究参与者的观点和偏好。
基因组研究受到许多伦理问题的挑战,特别是在资源匮乏的地区。为了确定研究参与者对这些伦理挑战的看法和观点,我们采访了208名潜在的研究参与者。对基本的遗传知识、研究成果和偶然发现的回报以及二手数据的使用提出了看法。总体而言,87.5%的参与者了解基因组研究。约95.7%的参与者对遗传基础知识不了解,15.4%的参与者了解遗传研究的概念。大多数参与者(分别为92.3%和82.2%)表示更倾向于研究结果和偶然发现的回报。149名参与者(71.6%)对未来不明确使用其血液样本和医疗信息表示保留,而76.4%的参与者对与其他研究人员共享数据表示担忧。在设计基因组研究方案时,应充分考虑参与者的偏好。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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