Ethical issues in human genomics research in developing countries.
Ethical issues in human genomics research in developing countries.
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DOI：
10.1186/1472-6939-12-5
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发表时间：
2011-03-18
影响因子：
2.7
通讯作者：
Parker M
中科院分区：
文献类型：
--
作者：
de Vries J;Bull SJ;Doumbo O;Ibrahim M;Mercereau-Puijalon O;Kwiatkowski D;Parker M
全基因组关联研究 (GWAS) 提供了一种强大的方法来识别在常见疾病中发挥作用的遗传变异。此类研究提出了重要的伦理挑战。越来越多的 GWAS 正在低收入国家进行，迫切需要确定在这种背景下出现的特定伦理挑战。在本文中，我们借鉴 MalariaGEN 联盟的经验来确定非洲、亚洲和大洋洲此类研究提出的具体伦理问题。我们探讨三个关键领域的伦理问题：保护研究参与者的利益、国际基因组学合作研究的监管以及保护低收入国家科学家的利益。对于参与者而言，在社区协商和同意方面提出了重要挑战。基因组学研究提出了有关样本出口和所有权、存档样本的使用以及审查此类大型国际项目的复杂性的伦理和治理问题。在保护低收入国家研究人员利益的背景下，我们讨论了可持续和互利合作需要考虑的数据共享和能力建设方面。当对平均收入和识字水平较低的人群（例如 MalariaGEN 中包含的人群）进行基因组学研究时，会引发许多伦理问题。在此类研究中适当解决此类问题非常重要。我们的经验表明，如果将伦理嵌入到此类研究项目的设计和实施中，就可以最好地识别、分析和解决基因组学研究中的伦理问题。
Genome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania. We explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations. Many ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects.
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认真对待社会关系：从肯尼亚海岸的疫苗试验的知情同意习惯中学到的教训。
影响因子：
5.4
作者：
Gikonyo, Caroline;Bejon, Philip;Marsh, Vicki;Molyneux, Sassy
通讯作者：
Molyneux, Sassy
影响因子：
15.8
作者：
Kass NE;Hyder AA;Ajuwon A;Appiah-Poku J;Barsdorf N;Elsayed DE;Mokhachane M;Mupenda B;Ndebele P;Ndossi G;Sikateyo B;Tangwa G;Tindana P
通讯作者：
Tindana P
影响因子：
4.1
作者：
Andanda, P. A.
通讯作者：
Andanda, P. A.
影响因子：
4.5
作者：
Church, George;Heeney, Catherine;Weir, Bruce
通讯作者：
Weir, Bruce
DOI：
10.2307/3563634
发表时间：
2003-03-01
期刊：
IRB
影响因子：
--
作者：
Kass, Nancy;Dawson, Liza;Loyo-Berrios, Nilsa I
通讯作者：
Loyo-Berrios, Nilsa I