Regulation

Advancing Regulation of Genetic Counsellors 

There are over 600 genetic counsellors (GCs) who play integral roles across the Canadian healthcare system. These highly trained allied health professionals are valued for their unique skill set, which includes expertise in genetics, the ability to communicate complex information, and the provision of psychosocially oriented care to diverse audiences. Despite these contributions, genetic counsellors do not have consistent legal recognition across Canada through mechanisms such as professional regulation, which provides important protections for both the public and the profession. 

In 2025, a statement on regulation was developed by a multidisciplinary sub-committee which included representatives from national and provincial genetic counsellor associations, genetic counsellors, a clinical geneticist, a genomics policy expert, and a patient advocate. The statement aims to provide a nationally informed, peer-reviewed consensus on the importance of regulating genetic counsellors in Canada.

Link to the National Position Statement on the Regulation of Genetic Counsellors in Canada coming soon 

The CAGC-CBGC Provincial and Territorial Working Group continues to take action on issues affecting genetic counsellors in Canada, including the advancement of regulation. 

We are grateful for support in our call to action from health professionals, national and provincial medical associations, employers, provincial and territorial governments and Ministries of Health, as well as patients and patient advocacy groups. Individuals are encouraged to use the templates below to submit a letter of support to their respective provincial organization. These organizations will communicate with you about regional initiatives and activities.

Health Care Provider/Employer template

Patient and Patient Organization template

Contact Information for Provincial Genetic Counsellor Organizations 

Resources

These resources, while not exhaustive, collectively represent key literature on the clinical, ethical, legal, and regulatory dimensions of genetic counselling, including evidence of potential harms, the importance of specialized training, and ongoing discussions surrounding professional recognition and oversight.

Bensend, T. A., Veach, P. M. C., & Niendorf, K. B. (2014). What’s the harm? Genetic counselor perceptions of adverse effects of genetics service provision by non-genetics professionals. Journal of Genetic Counseling, 23(1), 48–63. https://doi.org/10.1007/s10897-013-9605-3 

Bonadies, D. C., Brierley, K. L., Barnett, R. E., Baxter, M. D., Donenberg, T., Ducaine, W. L., Ernstx, M. E., Homer, J., Judkins, M., Lovick, N. M., Powers, J. M., Stanislaw, C., Stark, E., Stenner, R. C., & Matloff, E. T. (2014). Adverse Events in Cancer Genetic Testing: The Third Case Series. Cancer J. 2012 Jul-Aug;18(4):303-9. Jul-Aug;20(4):246-53. https://doi.org/10.1097/ppo.0000000000000057

Brierley, K. L., Blouch, E., Cogswell, W., Homer, J. P., Pencarinha, D., Stanislaw, C. L., & Matloff, E. T. (2012). Adverse Events in Cancer Genetic Testing Medical, Ethical, Legal, and Financial Implications. Cancer J. Jul-Aug;18(4):303-9. https://doi.org/10.1097/ppo.0b013e3182609490

Elliott, A. M., & Friedman, J. M. (2018). The importance of genetic counselling in genome-wide sequencing. In Nature Reviews Genetics (Vol. 19, Issue 12, pp. 735–736). Nature Publishing Group. https://doi.org/10.1038/s41576-018-0057-3 

Farmer, M. B., Bonadies, D. C., Mahon, S. M., Baker, M. J., Ghate, S. M., Munro, C., Nagaraj, C. B., Besser, A. G., Bui, K., Csuy, C. M., Kirkpatrick, B., McCarty, A. J., Weiss McQuaid, S., Sebastian, J., Sternen, D. L., Walsh, L. K., & Matloff, E. T. (2019). Adverse Events in Genetic Testing: The Fourth Case Series. Cancer J. Jul/Aug;25(4):231-236. https://doi.org/10.1097/ppo.0000000000000391 

Farmer, M. B., Bonadies, D. C., Pederson, H. J., Mraz, K. A., Whatley, J. W., Darnes, D. R., Denton, J. J., De Rosa, D., Heatherly, A., Kenney, J., Lane, K., Paul, D., Pelletier, R. C., Shannon, K., Williams, D., & Matloff, E. T. (2021). Challenges and Errors in Genetic Testing The Fifth Case Series. Cancer J. Nov-Dec 01;27(6):417-422. https://doi.org/10.1097/ppo.0000000000000553 

Hoskins, C., Gaff, C., McEwen, A., Macciocca, I., Pearn, A., Shalhoub, C., Salvemini, H., Berkman, J., Riley, K. E., Williams, R., Milward, M., & Young, M. A. (2021). Professional regulation for Australasian genetic counselors. Journal of Genetic Counseling, 30(2), 361–369. https://doi.org/10.1002/JGC4.1344 

Knoppers, T., Haley, C. E., Patrinos, D., & Zawati, M. H. (2025). “Protection for the public, better use of resources and clearer lines”: Interviews with genetic counselors and their colleagues on the need for regulation in Quebec. Journal of Genetic Counseling, 34(2). https://doi.org/10.1002/jgc4.1960 

Lambert, D. M., Patrinos, D., Knoppers, B. M., & Zawati, M. H. (2022). Genetic counselors and legal recognition: A made-for-Canada approach. Journal of Genetic Counseling, 31(1), 49–58. https://doi.org/10.1002/jgc4.1468

National Society for Genetic Counsellors. State Licensure Resources.  https://www.nsgc.org/Advocacy/State-Licensure 

McCrary JM, Van Valckenborgh E, Poirel HA, de Putter R, van Rooij J, Horgan D, Dierks ML, Antonova O, Brunet J, Chirita-Emandi A, Colas C, Dalmas M, Ehrencrona H, Grima C, Janavičius R, Klink B, Koczok K, Krajc M, Lace B, Leitsalu L, Mistrik M, Paneque M, Primorac D, Roetzer KM, Ronez J, Slámová L, Spanou E, Stamatopoulos K, Stoklosa T, Strang-Karlsson S, Szakszon K, Szczałuba K, Turner J, van Dooren MF, van Zelst-Stams WAG, Vassallo LM, Wadt KAW, Žigman T, Ripperger T, Genuardi M, Van den Bulcke M, Bergmann AK. (2024). Genetic counselling legislation and practice in cancer in EU Member States. Eur J Public Health. Aug 1;34(4):666-675. https://doi.org/10.1093/eurpub/ckae093 

Patrinos, D., Caron, R., Maria Knoppers, B., Zawati, H., & Maria, B. (2020). Genetic counsellors, legal recognition, and the road less travelled. In McGill Journal of Law and Health (Vol. 14, Issue 1). https://mjlh.mcgill.ca/genetic-counsellors-legal-recognition-and-the-road-less-travelled/ 

Patrinos, D., Ghaly, M., Al-Shafai, M., & Zawati, M. H. (2023). Legal approaches to risk of harm in genetic counseling: perspectives from Quebec and Qatar. In Frontiers in Genetics (Vol. 14). Frontiers Media SA. https://doi.org/10.3389/fgene.2023.1190421

Patrinos D, Bonilha AE, Knoppers BM, Elliott AM; GenCOUNSEL Study; Zawati MH. (2026). Paths of legal recognition of genetic counselors in Canada: A framework for action. Journal of Genetic Counseling. Feb;35(1):e70159. https://doi.org/10.1002/jgc4.70159   

Rojas, S. K., Adam, S., Austin, J., Knoppers, B., Lynd, L. D., Dey, A., Bansback, N., Birch, P., Clarke, L., Dragojlovic, N., Friedman, J., Lambert, D., Pullman, D., Virani, A., Wasserman, W., Elliott, A. M., & Zawati, M. H. (2025). Genetic counselors outside of the genetics clinic: Roles, practices, and ethico-legal implications in light of lagging legal recognition across Canada. Journal of Genetic Counseling, 34(3). https://doi.org/10.1002/jgc4.1943 

Shugar, A. L., Quercia, N., Trevors, C., Rabideau, M. M., & Ahmed, S. (2017). Risk for Patient Harm in Canadian Genetic Counseling Practice: It’s Time to Consider Regulation. Journal of Genetic Counseling, 26(1), 93–104. https://doi.org/10.1007/s10897-016-9983-4

Zawati M. (2012). Les conseillers en génétique et les professions médicales et infirmières au Québec : des frontières brouillées ?, 2012 6-1 Revue de droit et santé de McGill 137, 2012 CanLIIDocs 24, https://canlii.ca/t/8l9