Bridging the Genomics Gap: The role of Large-scale Genotyping Projects in the Developing World and the Importance of Genomic Sovereignty

• Main Author: Hardy, Billie-Jo
• Other Authors: Daar, Abdallah
• Language: en_ca
• Published: 2012
• Subjects: genomics; sovereignty; science & technology; innovation; qualitative; case study; 0369; 0566
• Online Access: http://hdl.handle.net/1807/42497

In recent years, there have been several proposals for large-scale human genotyping projects in the developing world. The dissertation presented here explores the motivations, opportunities and challenges of initiating locally led, large-scale genotyping projects documenting human genomic variation in the developing world. I analyze two case studies: the Indian Genome Variation Consortium in India and the University of Cape Town, Department of Human Genetics and the African Genomics Education Initiative in South Africa. These case studies, together with similar projects in Mexico and Thailand provide compelling reasons for pursuing these projects: the potential to address local health needs and reduce health care costs; the opportunity to stimulate economic development through investments in genomic sciences, and the availability of unique population resources. In an effort to capture the value of these investments and promote an equal stake in international collaborations, Mexico and India have developed guidelines and laws to protect local human genetic material as a sovereign resource, referred to here as ‘genomic sovereignty’. Critics have suggested that it can impede international collaborations and reduce access to external funding. I provide an in depth analysis of genomic sovereignty and how it may contribute to each country’s aim of achieving health equity through investments in genomics, its relation to heritage and patrimony, and its potential limitations. The debate is critical, as the knowledge generated from large-scale human genomic research will need to be interpreted in larger international collaborative efforts before it can lead to health benefits. Qualitative case study methodology is employed and the primary data source consists of interviews conducted with key informants. The research described here provides a source of empirical description and analysis that is informing the framing of policies, principles and practices on how research infrastructure and capacity are being established for human genomic sciences in developing countries.