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H3africa联盟

The Human Health and Heredity (H3Africa）Consortium fosters genomic research on the African continent, by supporting infrastructural development, capacity building and research. It is comprised of 48 funded projects with 11 focusing on exploring pertinent ethical issues including issues around informed consent, community engagement, stigma and return of individual genetic research results.

Concerns about genomics research in Africa

当H3Africa于2012年首次获得资助时，基因组学是进行研究的大多数机构和国家的新手。当时，只有很少的医学基因组研究项目涉及非洲参与者，例如MalariaGEN，，，，hapmapand1000Genomesas notable exceptions. In particular, the proposed storage and sharing of large amounts of African DNA samples and data – integral to genomic science and increasingly common in medical research – raised considerable concerns by African regulators and scientists. Amongst a range of concerns, what stood out most clearly were concerns about exploitation and harm.

关于非洲研究人员在H3AFRICA研究中的作用的问题主要是对剥削的关注。担心的是，他们将只是样本收集者，并且不会有权领导研究设计，数据分析和写入。关于危害问题，对非洲研究参与者（可能具有较低研究和健康素养的人）是否会受到研究的损害，例如通过增加污名或声誉危害，这引起了人们的关注。

考虑到基因组学研究结果的临床应用，通常需要一段时间，并且需要进一步研究从H3AFRICA项目中收集的样本和数据，因此更普遍地担心研究参与者和研究参与者社区和卫生系统将从此类基因组学研究中受益。

Engagement matters

监管机构和非洲研究人员提出的担忧是严密的。在基因组学研究中包含非洲样本可能会改善任何基因组学发现的鲁棒性。通常，对非洲人口的影响。因此，促进非洲基因组学研究对全球科学界和非洲人口都具有价值，并具有所需的机制，以解决非洲研究人员和监管机构至关重要的关注。

Against this background, the H3Africa Working Group on Ethics and Community Engagement – which all three authors have chaired previously – recognized the importance of having a platform to foster a substantive discussion about the ethics of African genomics research on the continent. This discussion would not only need to be premised on conceptual analysis, empirical data and guideline development but also importantly would need to engage individuals who are involved in research ethics regulation around the continent. In other words – we recognized that in order to fuel a substantive African engagement with the ethics of genomics research, we needed to engage the community of research ethics regulators.

As an initial response to this need, H3Africa supported a series of broad consultations with members of research ethics committees, national ethics councils and policy makers from across the continent. Over the course of three years, we held consultations that progressively involved close to 200 of these利益相关者。从这些consultations，人们达成共识，即一份文档的迫切需要提出一系列与非洲社区主义世界观共鸣的原则，并在考虑可取性时，就剥削和伤害的一些关注以及解决了一些关注的指导。拟议的基因组学研究。因此，我们的参与为“非洲基因组研究和生物群的最佳实践的道德和治理框架”. This document was developed in collaboration with a community of ethics regulators and has been lauded as awelcome development for genomics research in Africa。我们还设计了有关研究伦理委员会成员基因组学研究的培训，有关社区参与的指导文件以及基因组学研究的知情同意。这些工具将帮助非洲研究人员和监管机构与合作者和赞助商进行有意义的谈判，以尽可能地减轻任何剥削或损害的潜力。

我们的活动有了工具,帮助广告dress the immediate concerns of exploitation of African researchers and potential harm to participants. The degree to which these tools are used beyond H3Africa projects is not known. With emerging ethical concerns, such as those to do with return of individual findings of genomics research and use of results for commercial purposes, insights from African researchers, regulators and potential participants remains invaluable.

Emerging from its ongoing 14^Thmeeting in Accra Ghana, the H3Africa Consortium is keen to support the implementation of more consultations to debate ethical issues in genomics research in Africa and develop tools to help address them. For sustainability, there is the need for African governance institutions to also progressively support these initiatives. Institutions like the African Academy of Sciences are already stepping up, however something more substantive from the African Union would be ideal.