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撒哈拉以南非洲人类遗传研究的伦理问题:以喀麦隆为例的文献计量分析。

Ethics of human genetic studies in sub-saharan Africa: the case of Cameroon through a bibliometric analysis.

机构信息

Faculty of Health Sciences, Division of Human Genetics, University of Cape Town, Anzio Road, Cape Town 7925, South Africa.

出版信息

Dev World Bioeth. 2011 Dec;11(3):120-7. doi: 10.1111/j.1471-8847.2011.00305.x. Epub 2011 Jul 22.

DOI:10.1111/j.1471-8847.2011.00305.x
PMID:21781234
Abstract

UNLABELLED

Many ethical concerns surrounding human genetics studies remain unresolved. We report here the situation in Cameroon.

OBJECTIVES

To describe the profile of human genetic studies that used Cameroonian DNA samples, with specific focus on i) the research centres that were involved, ii) authorship, iii) population studied, iv) research topics and v) ethics disclosure, with the aim of raising ethical issues that emerged from these studies.

METHOD

Bibliometric Studies; we conducted a PubMed-based systematic review of all the studies on human genetics that used Cameroonian DNA samples from 1989 to 2009.

RESULTS AND DISCUSSION

Fifty articles were identified, involving predominantly research centres from Europe (64%) and America (32%). Only 7 (14%) Cameroonian institutions and 14 (28%) Cameroonian authors were associated with these publications. At least 52% of publications were devoted to population genetics (variation/migration patterns) amongst 30 Cameroonian ethnic groups. Very few studies concerned public health related genetic issues and only 5 (10%) references were found for hemoglobinopathies like sickle cell anaemia. Almost all DNA samples are 'banked' outside of the African continent. Capacity building, rights to the genetic information and benefits to the individuals, communities and populations who contribute to these studies are addressed.

CONCLUSIONS

  1. Our data suggests the need for a wider debate towards building capacity and addressing ethical issues related to human genomic research in sub-Saharan Africa and specifically in Cameroon; 2) National ethical guidelines and regulations concerning the collection, use and storage of human DNA are urgently needed in Cameroon.
摘要

未加标签

许多与人类遗传学研究相关的伦理问题仍未得到解决。我们在此报告喀麦隆的情况。

目的

描述使用喀麦隆人 DNA 样本的人类遗传学研究的概况,重点关注:i)参与的研究中心;ii)作者身份;iii)研究人群;iv)研究主题;v)伦理学披露,目的是提出这些研究中出现的伦理问题。

方法

文献计量学研究;我们对 1989 年至 2009 年间所有使用喀麦隆人 DNA 样本的人类遗传学研究进行了基于 PubMed 的系统综述。

结果与讨论

共确定了 50 篇文章,主要涉及来自欧洲(64%)和美洲(32%)的研究中心。只有 7 个(14%)喀麦隆机构和 14 个(28%)喀麦隆作者与这些出版物有关。至少 52%的出版物致力于研究 30 个喀麦隆族群的群体遗传学(变异/迁徙模式)。很少有研究涉及与公共卫生相关的遗传问题,只有 5 篇(10%)参考文献涉及镰状细胞贫血等血红蛋白病。几乎所有的 DNA 样本都在非洲大陆以外“储存”。讨论了能力建设、遗传信息权利以及对为这些研究做出贡献的个人、社区和人群的利益。

结论

1)我们的数据表明,有必要更广泛地讨论在撒哈拉以南非洲,特别是在喀麦隆,建立能力和解决与人类基因组研究相关的伦理问题;2)喀麦隆迫切需要制定有关收集、使用和储存人类 DNA 的国家伦理准则和法规。

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