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HomeGenetic testing in emerging economies (GenTEE)
Summary report
Genetic testing in emerging economies (GenTEE)
Summary report
Metadados da publicação
Due to the epidemiological transition in the emerging economies of China, East Asia, India, Latin America, the Middle East and South Africa, these economies are dealing with an increasing proportion of morbidity and mortality due to congenital and genetic conditions, and a rising need for genetic services to improve patient outcomes and overall population health. For this reason, they are facing the challenge how to ensure the successful translation of genetic/genomics laboratory and academic research into quality assured pathways, and to develop a service delivery infrastructure that leads to equitable and affordable access to high quality genetic/genomic testing services. The GenTEE international project is intended to inform policy decisions for the challenges of delivering equitable high quality genetic services and to promote international collaboration for capacity building. A standardized survey has been carried out, that is the first of its worldwide that allows comparison of services internationally across a number of key dimensions by using a core set of indicators, selected by the GenTEE consortium for their relevance and comparability. To date, the GenTEE project has completed its survey that maps the current state of genetic services in the participating countries and identifies current drivers, barriers and opportunities for genetic services development. The results show that there is no equitable access to genetic services in all countries mainly due to financial barriers (underfunded fragmented public services, out-of-pocket expenses tend to be the norm for genetic testing services), geographical barriers (concentration of services in main cities) and skill gaps, resulting in inequitable services or delayed access. The development of services in the private sector is opportunistic and mostly technology and market driven. There is a marked lack of standard operating procedures and agreed quality assessment processes for new technologies. An international collaborative networks can provide support for capacity building and help to strengthen the provision of quality genetic/genomic services in emerging economies.
- Publicado em:
- Autor(es) institucional(ais): Instituto de Saúde e Proteção dos Consumidores (Centro Comum de Investigação)
- Autores pessoais: Christianson, Arnold ; Gribaldo, Laura ; Harris, Hilary ; Nippert, Irmgard ; Kent, Alastair ; Kristoffersson, Ulf ; Horovitz, Dafne ; Schmidtke, Jörg ; Padilla, Carmencita ; Verma, Ishwar C ; Kamal Abdel-Raouf, Randa ; Penchaszadeh, Victor ; Rajab, Anna ; Zhong, Nanbert
- Temas: Investigação médica e biológica
- Tema: cooperação científica , cooperação internacional , doença congénita , genética , investigação médica , relatório de investigação , saúde pública , sistema de saúde
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| ISSN 1831-9424 | ISBN 978-92-79-33203-6 | DOI 10.2788/26690 | Número de catálogo LB-NA-26169-EN-N |
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| ISSN 1018-5593 | ISBN 978-92-79-33204-3 | DOI 10.2788/26784 | Número de catálogo LB-NA-26169-EN-C |
- Released on EU Publications:
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