Research Article: Genetic counseling globally: Where are we now?

Date Published: March 25, 2018

Publisher: John Wiley and Sons Inc.

Author(s): Kelly E. Ormond, Mercy Ygoña Laurino, Kristine Barlow‐Stewart, Tina‐Marié Wessels, Shelley Macaulay, Jehannine Austin, Anna Middleton.

http://doi.org/10.1002/ajmg.c.31607

Abstract

The genetic counseling profession is continuing to develop globally, with countries in various stages of development. In some, the profession has been in existence for decades and is increasingly recognized as an important provider of allied health, while in others it is just beginning. In this article, we describe the current global landscape of the genetic counseling specialty field’s professional development. Using examples of the United States, United Kingdom, Canada, Australia, South Africa, and various countries in Asia, we highlight the following: (a) status of genetic counseling training programs, (b) availability of credentialing through government and professional bodies (certification, registration, and licensure), and potential for international reciprocity, (c) scope of clinical practice, and (d) health‐care system disparities and cultural differences impacting on practice. The successful global implementation of precision medicine will require both an increased awareness of the importance of the profession of “genetic counselor” and flexibility in how genetic counselors are incorporated into each country’s health‐care market. In turn, this will require more collaboration within and across nations, along with continuing engagement of existing genetic counseling professional societies.

Partial Text

The profession of genetic counseling started in the United States with the advent of the first master’s level training program at Sarah Lawrence College in New York in 1969. Since then, the profession has expanded globally, and in early 2018 we estimate there are nearly 7,000 genetic counselors in over 28 countries (see Table 1). In some countries (South America, many parts of Africa and Asia, and some European countries), physicians primarily provide genetic counseling; in some cases that is even a legal requirement as genetic counseling is considered a medical service. However, even in these countries, genetic service development is being forged with the input and support of genetic counselors who have often trained outside of their countries. Elsewhere around the world, the genetic counseling profession is in various stages of development; training programs are being established, and in some cases, forms of regulation and/or credentialing are being implemented, often leading to the national recognition of the profession.

In the late 1980s, nearly 20 years after the profession of genetic counseling was established, approximately 15 genetic counseling masters programs existed in the United States. A certification examination had been developed in 1981 in conjunction with credentialing of medical geneticists, and work was underway to establish more rigorous and consistent criteria for genetic counseling training (Scott, Walker, Eunpu, & Djurdjinovic, 1988; Walker et al., 1990). This ultimately led to the establishment of the American Board of Genetic Counseling (ABGC) in 1993, which began certifying genetic counselors and accrediting training programs in the United States and Canada, a role now undertaken by the Accreditation Council for Genetic Counseling (ACGC) (https://www.abgc.net/about-abgc/detailed-history.aspx/, accessed January 25, 2018). During this period, the curriculum and clinical training requirements were established and continue in similar form even in 2018 as described by the current ACGC standards and practice‐based competencies (http://www.gceducation.org/Pages/Standards.aspx, accessed January 25, 2018).

Table 2 summarizes the current state of credentialing and continuing education requirements in several countries. As our profession becomes increasingly global, and given workforce shortages of genetic counselors in some countries (e.g., Dobson and DaVanzo, 2016), the potential for genetic counselors to become credentialed through processes of certification, registration, or licensure in countries other than where they have trained has become a critical issue. These terms are often used interchangeably but they have slightly different meanings and may be implemented in different manners even when the credentialing intent is similar. Key to this discussion is understanding that credentialing can occur through a statutory (governmental) regulation, either as a state‐, province‐ or country‐based format, or through professional organizations.

In most countries, the scope of practice of master’s‐trained genetic counselors includes working with patients (and their families) who face conditions with a genetic component in a clinical setting. The National Society of Genetic Counselors (NSGC) has framed the clinical scope of practice for genetic counselors to include medical roles (history taking; risk assessment; education regarding inheritance, natural history, and genetic testing; coordination of testing, including cascade testing, and in some cases ordering the genetic testing), psychosocial support (assessing adaptation, providing anticipatory guidance and short‐term client‐centered counseling) and case management (documentation; provision of resources) (https://www.nsgc.org/p/cm/ld/fid=18#scope, accessed January 22, 2018). These roles seem to occur at least in part across the globe by individuals trained as genetic counselors, though there is within and between country variation in how these roles are implemented, and specifically with regard to how psychotherapeutic the genetic counseling process is. Within the United Kingdom, Australia, and South Africa, genetic counselors aim to follow a patient‐centered psychotherapeutic process, integrating genetics/genomics knowledge into a consultation that is based on the clients’ needs (Clarke et al., 2007; Middleton, Hall, & Patch, 2015). In the United States and Canada, though the importance of a “psychosocial” focus to the genetic counseling interaction has been recognized as a core, or foundational element (Veach, Bartels, & LeRoy, 2007; http://www.gceducation.org/Documents/ACGC%20Core%20Competencies%20Brochure_15_Web.pdf, accessed February 12, 2018), process studies show that genetic counselors tend to practice in a more didactic, teaching model‐based manner (Hartmann, Veach, MacFarlane, & LeRoy, 2015; Lerner et al., 2014; Meiser, Irle, Lobb, & Barlow‐Stewart, 2008; Roter, Ellington, Erby, Larson, & Dudley, 2006). Growing evidence suggests the best patient outcomes are associated with a more counseling‐based model (Redlinger‐Grosse et al., 2016), and this is currently pushing the profession in these countries toward refocusing on the psychotherapeutic aspects of the work (Austin, Semaka, & Hadjipavlou, 2014).

An important global difference in how genetic counseling is practiced can be traced back to the different type of health systems that exist, including which types of patients can be seen autonomously, which services and tests are available and how they are offered, billed, ordered, and reimbursed. Accessibility to genetic testing is based on several issues: availability of testing (including laws that may govern whether testing may occur internationally or only in‐country), variation in what tests are covered by public and private payer systems, as well as who is permitted to order (request) tests. Below, we provide several examples of practice variation based on health‐care system, contrasting systems that are primarily publically funded (e.g., United Kingdom, Canada, Taiwan, South Korea) with those who have mixed systems (e.g., Australia, South Africa, Philippines, etc.) and those that are primarily private payer systems (United States). We will also discuss how these variations include the clinical incorporation of noninvasive prenatal screening (NIPS) and whole exome/genome sequencing (WES/WGS).

Genetic counseling is a rapidly growing profession with the overarching goal to add value to the care of patients with genetic conditions and their families. There are many global similarities in the educational process, mechanisms of credentialing, and the scope of practice, but the profession has evolved in unique ways in different countries due to varying health‐care systems, legal restrictions, and cultural issues. The era of precision medicine is further challenging the way that genetic testing is offered, and the roles that genetic counselors play; thus far a “one size fits all” definition of the job title “genetic counselor” does not exist. Genetic counselors can learn from each other, sharing experiences, building on what works in other countries and adapting it to unique circumstances in one’s own home country in order to improve care for our patients and their families. Together, we can be solution‐driven in strategically increasing professional recognition—both within and across nations.

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Source:

http://doi.org/10.1002/ajmg.c.31607

 

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