A genetic counseling needs assessment of Mexico

Abstract

Background While genetic counseling has expanded globally, Mexico has not adopted it as a separate profession. Given the rapid expansion of genetic and genomic services, understanding the current genetic counseling landscape in Mexico is crucial to improving healthcare outcomes. Methods Our needs assessment strategy has two components. First, we gathered quantitative data about genetics education and medical geneticists’ geographic distribution through an exhaustive compilation of available information across several medical schools and public databases. Second, we conducted semi‐structured interviews of 19 key‐informants from 10 Mexican states remotely with digital recording and transcription. Results Across 32 states, ~54% of enrolled medical students receive no medical genetics training, and only Mexico City averages at least one medical geneticist per 100,000 people. Barriers to genetic counseling services include: geographic distribution of medical geneticists, lack of access to diagnostic tools, patient health literacy and cultural beliefs, and education in medical genetics/genetic counseling. Participants reported generally positive attitudes towards a genetic counseling profession; concerns regarding a current shortage of available jobs for medical geneticists persisted. Conclusion To create a foundation that can support a genetic counseling profession in Mexico, the clinical significance of medical genetics must be promoted nationwide. Potential approaches include: requiring medical genetics coursework, developing community genetics services, and increasing jobs for medical geneticists.

An international telemedicine program for diagnosis of genetic disorders: Partnership of pediatrician and geneticist

“…The lack of access to medical genetic services in Latin America poses a tremendous challenge to achieving the World Health Organization (WHO) Human Genomics in Global Health Initiative goals (Bucio et al, 2019). This article describes an international model to provide genomic services to facilitate access to underserved populations and help reduce health inequalities by facilitating diagnosis and management of genetic diseases.…”

“…In the Dominican Republic, several patients with rare diseases remain undiagnosed for several reasons including insufficient number of genetic providers, lack of disease awareness among physicians and other health care providers, and limited diagnostic and management resources. The Latin American region has limited access to genetic services and many obstacles including insufficient medical genetics education, poor patient health awareness, regional distribution of providers, and difficulties in accessing diagnostic genetic testing (Bucio, Ormond, Hernandez, Bustamante, & Lopez Pineda, 2019).…”

Genetic counseling education at the undergraduate level: An outreach initiative to promote professional recruitment and support workforce development

“…Although the field has grown in India and elsewhere since the course was conceived in the year 2016, there are still several challenges surrounding genetic counseling workforce development. These challenges, including relatively low awareness of the genetic counseling profession, limited opportunities for shadowing, lack of national recognition of genetic counseling as a healthcare service, and lack of establishment of practice standards, are not unique to India (Baty, 2018; Bucio, Ormond, Hernandez, Bustamante, & Lopez Pineda, 2019; Laurino et al, 2017; Ormond et al, 2018; Sun, Liang, Zhu, Shen, & He, 2019). Country‐specific studies to assess the factors that influence workforce development could be beneficial in providing a framework for growth of the profession.…”

Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents’ associations

“…Papers published in the last 30 years (from 1991 to date) were analyzed, also relating to thematic areas different from clinical genetics, such as clinical psychology and bioethics, thus allowing an integration between the aspects of genetic diseases related to communication and bioethics and the biological and clinical ones, also considering the new techniques of genomic diagnosis [5,[12][13][14]. After a search in the literature databases by using the key words above mentioned, we found a few dozen articles related to general aspects of the communication skills of healthcare professionals and to genetic counselling, and about ten among them were of the last decade [12][13][14][15][16][17][18][19][20]. Even fewer were the studies found on prenatal counselling, as well as on communication of neonatal genetic disorders and/or single diseases, such as Down syndrome, cystic fibrosis, sickle cell anemia, thalassaemia, deafness [21][22][23][24][25].…”