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Revista Cubana de Salud Pública

versão impressa ISSN 0864-3466versão On-line ISSN 1561-3127

Resumo

ROJAS BETANCOURT, Iris Andrea  e  MARCHECO TERUEL, Beatriz. Effectiveness and ethical aspects of genetic counseling in Cuba. Rev Cubana Salud Pública [online]. 2021, vol.47, n.1, e2191.  Epub 01-Mar-2021. ISSN 0864-3466.

Introduction:

Genetic counseling is the central process in the management of genetic disorders, hence the importance of assessing its effectiveness.

Objective:

Assess the effectiveness and ethical aspects of genetic counseling in Cuba.

Methods:

An observational - descriptive - retrospective study was conducted from 2003 to 2013, which consisted of conducting interviews based on instruments designed and validated with families assisted in genetic counseling services and other citizens; the sample consisted of 13 142 individuals.

Results:

The level of knowledge acquired was good in 71.1% of the participants; very rational decisions predominated (68.4%); in 74.9% of the families a good adjustment was achieved in relation to the particular situation. The population is highly satisfied with the genetic counselling services (89.8%). Most consider secondary diseases prevention to be the top priority for medical genetics (81.3%), 93% agree with selective abortion as a reproductive option after a diagnosis of serious and early-onset genetic diseases, and 76.5% prefer the non-directive approach to genetic counseling.

Conclusions:

The genetic counseling offered in the medical genetics services of Cuba is effective, satisfies the expectations of the population and complies with universally accepted ethical principles. The methodology designed and applied, based on the organization of genetic services in Cuba, allows the systematic assessment of genetic counseling, which males possible their improvement and the chance of devising local strategies to increase their effectiveness and achieve excellence in the service.

Palavras-chave : Genetic counseling; genetic services; effectiveness; satisfaction; ethical aspects; Cuba.

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