Hetu Martin, Koutouki Konstantia, Joly Yann
Department of Human Genetics, Faculty of Medicine, Centre of Genomics and Policy, McGill University, Montreal, QC, Canada.
Faculty of Law, Université de Montréal, Montreal, QC, Canada.
Front Genet. 2019 Feb 15;10:95. doi: 10.3389/fgene.2019.00095. eCollection 2019.
Genomic medicine applications have the potential to considerably improve health care in developing countries in the coming years. However, if developing countries do not improve their capacity for research and development (R&D) in the field, they might be left out of the genomics revolution. Large-scale and widely accessible databases for storing and analyzing genomic data are crucial tools for the advancement of genomic medicine. Building developing countries' capacity in genomics is accordingly closely linked to their involvement in international human genomics research initiatives. The purpose of this paper is to conduct a pilot study on the impact of international open science genomics projects on capacity building in R&D in developing countries. Using indicators we developed in previous work to measure the performance of international open science genomics projects, we analyse the policies and practices of four key projects in the field: the International HapMap Project, the Human Heredity and Health in Africa Initiative, the Malaria Genomic Epidemiology Network and the Structural Genomics Consortium. The results show that these projects play an important role in genomics capacity building in developing countries, but play a more limited role with regard to the potential redistribution of the benefits of research to the populations of these countries. We further suggest concrete initiatives that could facilitate the involvement of researchers from developing countries in the international genomics research community and accelerate capacity building in the developing world.
基因组医学应用在未来几年有潜力大幅改善发展中国家的医疗保健状况。然而,如果发展中国家不提高其在该领域的研发能力,它们可能会被排除在基因组学革命之外。用于存储和分析基因组数据的大规模且广泛可用的数据库是推动基因组医学发展的关键工具。因此,建设发展中国家的基因组学能力与其参与国际人类基因组学研究计划密切相关。本文旨在对国际开放科学基因组学项目对发展中国家研发能力建设的影响进行一项试点研究。我们使用在先前工作中开发的指标来衡量国际开放科学基因组学项目的绩效,分析该领域四个关键项目的政策和实践:国际人类基因组单体型图计划、非洲人类遗传与健康倡议、疟疾基因组流行病学网络和结构基因组学联盟。结果表明,这些项目在发展中国家的基因组学能力建设中发挥着重要作用,但在将研究利益潜在重新分配给这些国家的人群方面作用较为有限。我们进一步提出具体举措,以促进发展中国家的研究人员参与国际基因组学研究社区,并加速发展中世界的能力建设。