Risk for Patient Harm in Canadian Genetic Counseling Practice: It's Time to Consider Regulation

Abstract

With the increasing awareness of genetic contributions to disease in Canada, the availability of and demand for genetic testing has soared. Genetic counseling is becoming a recognized and rapidly growing (yet unregulated) health profession in Canada. We hypothesized that the potential risk for harm to the public posed by genetic counseling practice in the province of Ontario is sufficient to consider regulation. The Ontario Ministry of Health and Long-Term Care (MOHTLC) sets criteria (both primary and secondary) to identify health professional bodies that meet the threshold for regulation in the province. We developed a survey based on the MOHTLC criteria to determine if genetic counselors meet the primary criteria to be considered for health professions regulation in Ontario. We surveyed 120 Ontario genetic counselors about their clinical practice and perceptions of risk for harm to the public. Results indicate that Ontario genetic counselors are highly independent in their clinical practice and are involved in patient care activities, clinical judgement and decision-making that have the potential to harm patients. In particular, cancer genetic counselors were identified as a cohort that practices with relatively high autonomy and low supervision. In summary, our study indicates that genetic counseling practice in Ontario meets the primary criteria to be considered for regulation.

The composition and capacity of the clinical genetics workforce in high-income countries: a scoping review

“…In addition, the models used for legal recognition of GCs in different jurisdictions can have a significant influence on the types of tasks that can be delegated or performed independently by GCs. Several different models of legal recognition and regulation of GCs are described in the literature,, 3,27,[35][36][37]39,55 and, although such recognition and regulation may enhance patient safety, the impact of different models on workforce capacity is unclear.…”

“…27 The regulatory framework for GCs and genetic nurses was highly variable across jurisdictions, and a number of publications discussed different elements of legal regulation, professional recognition, registration, and licensure. 3,27,[35][36][37][38][39] Provider-population ratios for CGs were estimated as 0.3 FTE per 100,000 inhabitants in Chile and 0.6 FTE per 100,000 inhabitants in Australia, and it was argued that these ratios indicated a shortage. 22,23,28 Included studies reported the absolute number of CGs in Portugal (30 practicing), Chile (28 practicing), the United States (over 250 practicing survey respondents), and Australia (approximately 150 medical genetics fellowship graduates).…”

Genetic counseling: Growth of the profession and the professional

“…Consistently, the least satisfactory areas are opportunities for career advancement and salary. There is also literature related to concerns about a lack of respect and/or autonomy for genetic counselors (Atzinger et al, ) although recently genetic counselors have made the case for autonomy in their quest for regulation (Shugar et al, ).…”

Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

“…There is growing recognition of GCs internationally, with recent moves to register the profession in Europe (Paneque et al, 2016;Pestoff et al, 2016). Despite this, genetic counseling is not a registered profession in many countries, including Sweden (Pestoff et al, 2016) and Canada (Shugar et al, 2017). Shugar et al (2017) Regulation of GC practice is important as more roles will involve GCs to be based in MDT as the genetics expert (Middleton et al, 2017;Patch & Middleton, 2018).…”

“…Despite this, genetic counseling is not a registered profession in many countries, including Sweden (Pestoff et al, 2016) and Canada (Shugar et al, 2017). Shugar et al (2017) Regulation of GC practice is important as more roles will involve GCs to be based in MDT as the genetics expert (Middleton et al, 2017;Patch & Middleton, 2018). Importantly, professional registration and GC certification in both the UK and USA have lead to more autonomous practice opportunities and recognition of GC ability (Baty, 2018) and ensures quality and safe practice (Professional Standards Authority, 2016).…”