The Global State of the Genetic Counseling Profession

Abstract

The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.

Readiness of clinical genetic healthcare professionals to provide genomic medicine: An Australian census

“…Although a systematic audit was not possible, the size of the potential clinical genetic healthcare professional workforce (i.e., including those trained but not practicing) in Australia in 2017 was calculated to give an estimated denominator of 630 (Table ). In Australia, graduates of a Master of Genetic Counseling degree may work in a clinical role under the supervision of a clinical geneticist and a certified genetic counselor, and are termed Associate Genetic Counselors (Abacan et al, ). After at least 3 years of clinical practice they can attain certification by providing evidence to meet the HGSA Board of Censors knowledge, skills and competency requirements (Human Genetics Society of Australasia, ).…”

“…Genomic sequencing tests are rapidly becoming available in many healthcare systems worldwide, partly due to the decreasing costs (Stark et al, ). However, there are longstanding concerns internationally about the capacity of healthcare systems to provide genomic medicine – in terms of workforce numbers and ability to adopt new genomic technologies (Abacan et al, ; Australian Government Department of Health, ; Green, Guyer, & National Human Genome Research Institute, ; National Society of Genetic Counselors, ; Vassy, Korf, & Green, ). Here we define “genomic medicine” as applying knowledge of genomics to healthcare, and “genomic tests” as tests that use broad spectrum technologies to identify changes in the genome that impact health, for example, whole exome and whole genome sequencing (WES/WGS), gene panels, chromosomal microarray or non‐invasive prenatal testing.…”

Perspectives on facilitating whole exome sequencing for international patients at Mayo Clinic

“…Therefore, there are evidently different factors across the world that govern whether genetic tests such as WES are feasible in a specific country. In addition, it is estimated that about 100 genetic counselors practice in the Middle East compared to ~4,000 in the United States (Abacan et al, ), so we posit that less availability of genetic counselors to facilitate and help interpret genetic testing may also be a limiting factor in accessibility to certain genetic tests such as WES. However, there may be future options for facilitation of WES in our patients’ home countries, including direct to consumer whole genome sequencing (Manolio et al, ).…”

Summary report of the 2019 Diversity and Inclusion Task Force of the National Society of Genetic Counselors

“…The genetic counseling profession has undergone a remarkable expansion in the number of certified providers, their roles, and in the global reach of the profession (Abacan et al, 2019; American Board of Genetic Counseling, 2020). Despite this growth, genetic counselors' demographics have remained fairly homogenous and there is some evidence to suggest that this may also the case for some of the communities they serve (Armstrong, Micco, Carney, Stopfer, & Putt, 2005; Mittman & Downs, 2008; Nikolaidis et al, 2019).…”