Milena Paneque, Lídia Guimarães, Ane Sagardia, Inês Costa, Fernando Alvira-Iraizoz, Maria Tubío-Fungueiriño, Nelly Dewulf-Pasz, Pauline Villa, Maria A Ramos-Arroyo, Montse Fernández-Prieto
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引用次数: 0
Abstract
Background: Advances in medical genetics and the expansion of personalized medicine have made genetic counselling essential. The increasing workload of genetics professionals highlights the need for strategies that strengthen the services resilience. Genetic counselling supervision (GCS) is a structured routine of reflective practice that promotes safe practice, prevents burnout, and prepares professionals to adapt to new challenges, while supporting continuous improvement. However, GCS practices vary widely between countries: in many, these are not even known, while in others they are mandatory. This inequality results from the asymmetrical development of the genetic counselling profession globally. Spain, France, and Portugal have specialized training in this area, but only France has formally recognised the profession. Consequently, there is a small and geographically dispersed number of professionals, mostly without GCS access.
Objectives: Here we report how the MAG-SUDOE programme proposes a pioneering solution to jointly implement GCS and to strengthen the resilience of genetics services in southwestern Europe through activities linked to: 1) transferring experience from a Portuguese pilot action assessing the feasibility of a GCS programme; 2) jointly developing a transnational GCS intervention with genetics healthcare professionals of the three countries; and 3) designing a common strategy for its further implementation in the territory.
Methods: A transnational collaborative project have been implemented. A joint intervention was designed and will served as empirical base for the definition of national strategies for the implementation of GCS in the three countries.
Results: Fostering institutional alignment between genetic counselling professional bodies and lead consortia members, this project establishes a foundation to promote GCS on a transnational scale and generate evidence to guide health policy decisions for a more equitable and high-quality health system.
Discussion/conclusion: The programme is currently being implemented across the three countries through supervision groups with high engagement among participants.
期刊介绍:
The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals.
Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues.
The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries.
The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.