Abstract
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.
Highlights
The establishment of large-scale genomic databases to store data generated through genome sequencing is crucial for the advancement of genomic medicine
A number of experts are worried that if most developing countries do not substantially improve their capacity for research and development (R&D) in genomics and integrate the international research community, this will result in a technological lag comparable to that associated with the information technology revolution (Smith et al, 2004; Isaacson, 2016; Popejoy and Fullerton, 2016; Mathew et al, 2017)
Many authors have pointed out how difficult it is for researchers in developing countries to participate in large-scale international genomics research projects and to benefit from their achievements due, among other things, to lack of funding and to policies based on commercialization and intellectual property (IP) protection preventing their access to necessary knowledge (Barton, 2002; Wonkam and Mayosi, 2014; Forero et al, 2016; Helmy et al, 2016)
Summary
The establishment of large-scale genomic databases to store data generated through genome sequencing is crucial for the advancement of genomic medicine. A number of experts are worried that if most developing countries do not substantially improve their capacity for R&D in genomics and integrate the international research community, this will result in a technological lag comparable to that associated with the information technology revolution (Smith et al, 2004; Isaacson, 2016; Popejoy and Fullerton, 2016; Mathew et al, 2017) In this regard, many authors have pointed out how difficult it is for researchers in developing countries to participate in large-scale international genomics research projects and to benefit from their achievements due, among other things, to lack of funding and to policies based on commercialization and intellectual property (IP) protection preventing their access to necessary knowledge (Barton, 2002; Wonkam and Mayosi, 2014; Forero et al, 2016; Helmy et al, 2016)
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