Practicability of comprehensive care in clinical genetics in the brazilian unified health system: expanding the debate

Abstract

This article aims to highlight the discussions on the National Policy for Comprehensive Care in Clinical Genetics and reflect on its pending regulation when genomic discoveries change the model of health care. Nine of the ten causes of morbidity and mortality worldwide presents genetic/genomic predisposition. Based on strategic planning, this Policy proposes the organization of a network of referral services and specialized centers in genetics, with capacity to meet the needs of the population. Its regulation requires training and qualification of the health care professionals to provide comprehensive care, to optimize access, to identify and diagnose individuals with increased risk for injuries with genetic predisposition early. In primary health care, the care in question should not be interpreted as a specialty, but as specialized. This model presents innovative perspectives, in line with the principles and guidelines of the Unified Health System.

Genetic education, knowledge and experiences between nurses and physicians in primary care in Brazil: A cross‐sectional study

“…In Brazil, almost all patients and families affected by genetic illnesses are largely unfamiliar with their clinical condition (Flória‐Santos et al ., , ; Silva et al ., ). The government needs to provide more financial support for the inclusion and integration of genetic services in primary care in order to establish more effective family practice (Lopes‐Júnior et al ., ; Passos‐Bueno et al ., ; McWalter et al ., ). The World Health Organization supports this idea, indicating that GC is both feasible and necessary in PHC (World Health Organization, ).…”

“…Regulation of these public policies will help create a new healthcare model with new perspectives, without necessarily involving the establishment of new services with increased costs – the existing network and resources can be utilized. The development of a network of clinical genetics services is crucial to enhance care quality in a comprehensive, problem‐solving, and democratic way (Horovitz et al ., ; Lopes‐Júnior et al ., ,; Passos‐Bueno et al ., ).…”

“…Genomic-based health care is usually associated with high cost, thus, most professionals do not consider it a priority. This reflects individuals' and professionals' lack of understanding, resulting from most healthcare professionals' lack of knowledge of genetic risks and disease prevention strategies (Houwink et al, 2011;Lopes-Júnior et al, 2014a).…”

“…In order to achieve this goal, healthcare professionals require a basic knowledge of genetic principles and the ability to integrate genomics into their daily clinical practice (Thompson & Brooks, 2011;Boyes, 2013;Umberger et al, 2013;Seven et al, 2015). In Brazil, the need has been recognized to structure the Unified Health System (SUS)a network of regionalized and hierarchical servicesto provide comprehensive care in clinical genetics (Brazil, 2009;Lopes-Júnior et al, 2014a;Passos-Bueno et al, 2014;Ashton-Prolla et al, 2015). In 2009, Brazil's Ministry of Health proposed a plan of action to pursue this challenge (Brazil, 2009).…”

Genetic disease in the family: trajectories and experiences in public health services

“…In addition, this policy was intended to be incorporated and implemented by SUS at all levels of care, articulating the primary care network with prevention and identification of cases to be referred to specialized care. 2,[7][8][9][10] Above all, this Policy had the purpose of structuring, within the SUS, a regionalized and hierarchical system that would provide comprehensive care in clinical genetics and improve access to specialized services.…”