Skip to main content
Top
Published in: Journal of Genetic Counseling 1/2017

01-02-2017 | Original Research

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

Authors: Andrea L. Shugar, Nada Quercia, Christopher Trevors, Marina M. Rabideau, Sohnee Ahmed

Published in: Journal of Genetic Counseling | Issue 1/2017

Login to get access

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.
Appendix
Available only for authorised users
Literature
go back to reference Andermann, A., & Blancquaert, I. (2010). Genetic screening: a primer for primary care. Canadian Family Physician, 56(4), 333–339.PubMedPubMedCentral Andermann, A., & Blancquaert, I. (2010). Genetic screening: a primer for primary care. Canadian Family Physician, 56(4), 333–339.PubMedPubMedCentral
go back to reference Andermann, A., & Narod, S. A. (2002). Genetic counselling for familial breast and ovarian cancer in Ontario. Journal of Medical Genetics, 39(9), 695–696.CrossRefPubMedPubMedCentral Andermann, A., & Narod, S. A. (2002). Genetic counselling for familial breast and ovarian cancer in Ontario. Journal of Medical Genetics, 39(9), 695–696.CrossRefPubMedPubMedCentral
go back to reference Austin, J., Semaka, A., & Hadjipavlou, G. (2014). Conceptualizing genetic counseling as psychotherapy in the era of genomic medicine. Journal of Genetic Counseling, 23(6), 903–909.CrossRefPubMedPubMedCentral Austin, J., Semaka, A., & Hadjipavlou, G. (2014). Conceptualizing genetic counseling as psychotherapy in the era of genomic medicine. Journal of Genetic Counseling, 23(6), 903–909.CrossRefPubMedPubMedCentral
go back to reference Bensend, T. A., Veach, P. M., & 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.CrossRefPubMed Bensend, T. A., Veach, P. M., & 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.CrossRefPubMed
go back to reference Botkin, J. R., Belmont, J. W., Berg, J. S., Berkman, B. E., Bombard, Y., Holm, I. A., et al. (2015). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 97(1), 6–21.CrossRefPubMedPubMedCentral Botkin, J. R., Belmont, J. W., Berg, J. S., Berkman, B. E., Bombard, Y., Holm, I. A., et al. (2015). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 97(1), 6–21.CrossRefPubMedPubMedCentral
go back to reference Cameron, L. D., & Muller, C. (2009). Psychosocial aspects of genetic testing. Current Opinion in Psychiatry, 22(2), 218–223.CrossRefPubMed Cameron, L. D., & Muller, C. (2009). Psychosocial aspects of genetic testing. Current Opinion in Psychiatry, 22(2), 218–223.CrossRefPubMed
go back to reference Carroll, J. C., Rideout, A. L., Wilson, B. J., Allanson, J. M., Blaine, S. M., Esplen, M. J., et al. (2009). Genetic education for primary care providers: improving attitudes, knowledge, and confidence. Canadian Family Physician, 55(12), e92–e99.PubMedPubMedCentral Carroll, J. C., Rideout, A. L., Wilson, B. J., Allanson, J. M., Blaine, S. M., Esplen, M. J., et al. (2009). Genetic education for primary care providers: improving attitudes, knowledge, and confidence. Canadian Family Physician, 55(12), e92–e99.PubMedPubMedCentral
go back to reference Christian, S., Lilley, M., Hume, S., Scott, P., & Somerville, M. (2012). Defining the role of laboratory genetic counselor. Journal of Genetic Counseling, 21(4), 605–611.CrossRefPubMed Christian, S., Lilley, M., Hume, S., Scott, P., & Somerville, M. (2012). Defining the role of laboratory genetic counselor. Journal of Genetic Counseling, 21(4), 605–611.CrossRefPubMed
go back to reference Clarke, A., & Thirlaway, K. (2011a). Genetic counselling for personalised medicine. Human Genetics, 130(1), 27–31.CrossRefPubMed Clarke, A., & Thirlaway, K. (2011a). Genetic counselling for personalised medicine. Human Genetics, 130(1), 27–31.CrossRefPubMed
go back to reference Dillman, D. A. (2007). Mail and internet surveys: The tailored design method (2nd ed.). Hoboken: Wiley. Dillman, D. A. (2007). Mail and internet surveys: The tailored design method (2nd ed.). Hoboken: Wiley.
go back to reference Egalite, N., Groisman, I. J., & Godard, B. (2014). Genetic counseling practice in next generation sequencing research: implications for the ethical oversight of the informed consent process. Journal of Genetic Counseling, 23(4), 661–670.CrossRefPubMed Egalite, N., Groisman, I. J., & Godard, B. (2014). Genetic counseling practice in next generation sequencing research: implications for the ethical oversight of the informed consent process. Journal of Genetic Counseling, 23(4), 661–670.CrossRefPubMed
go back to reference Featherstone, C., Colley, A., Tucker, K., Kirk, J., & Barton, M. B. (2007). Estimating the referral rate for cancer genetic assessment from a systematic review of the evidence. British Journal of Cancer, 96(2), 391–398.CrossRefPubMedPubMedCentral Featherstone, C., Colley, A., Tucker, K., Kirk, J., & Barton, M. B. (2007). Estimating the referral rate for cancer genetic assessment from a systematic review of the evidence. British Journal of Cancer, 96(2), 391–398.CrossRefPubMedPubMedCentral
go back to reference Frelick, K., & McFadden, J. (2009). Significant changes to Ontario’s regulated health professions act, 1991 in effect. Health Law in Canada, 30(1), 24–27.PubMed Frelick, K., & McFadden, J. (2009). Significant changes to Ontario’s regulated health professions act, 1991 in effect. Health Law in Canada, 30(1), 24–27.PubMed
go back to reference Gordon, E. S., Griffin, G., Wawak, L., Pang, H., Gollust, S. E., & Bernhardt, B. A. (2012). “It’s not like judgment day”: public understanding of and reactions to personalized genomic risk information. Journal of Genetic Counseling, 21(3), 423–432.CrossRefPubMed Gordon, E. S., Griffin, G., Wawak, L., Pang, H., Gollust, S. E., & Bernhardt, B. A. (2012). “It’s not like judgment day”: public understanding of and reactions to personalized genomic risk information. Journal of Genetic Counseling, 21(3), 423–432.CrossRefPubMed
go back to reference Green, E. D., Guyer, M. S., & Institute, N. H. G. R. (2011). Charting a course for genomic medicine from base pairs to bedside. Nature, 470(7333), 204–213.CrossRefPubMed Green, E. D., Guyer, M. S., & Institute, N. H. G. R. (2011). Charting a course for genomic medicine from base pairs to bedside. Nature, 470(7333), 204–213.CrossRefPubMed
go back to reference Guttmacher, A. E., McGuire, A. L., Ponder, B., & Stefánsson, K. (2010). Personalized genomic information: preparing for the future of genetic medicine. Nature Reviews. Genetics, 11(2), 161–165.CrossRefPubMed Guttmacher, A. E., McGuire, A. L., Ponder, B., & Stefánsson, K. (2010). Personalized genomic information: preparing for the future of genetic medicine. Nature Reviews. Genetics, 11(2), 161–165.CrossRefPubMed
go back to reference Hawkins, A. K., & Hayden, M. R. (2011). A grand challenge: providing benefits of clinical genetics to those in need. Genetics in Medicine, 13(3), 197–200.CrossRefPubMed Hawkins, A. K., & Hayden, M. R. (2011). A grand challenge: providing benefits of clinical genetics to those in need. Genetics in Medicine, 13(3), 197–200.CrossRefPubMed
go back to reference Hooker, G. W., Ormond, K. E., Sweet, K., & Biesecker, B. B. (2014). Teaching genomic counseling: preparing the genetic counseling workforce for the genomic era. Journal of Genetic Counseling, 23(4), 445–451.CrossRefPubMedPubMedCentral Hooker, G. W., Ormond, K. E., Sweet, K., & Biesecker, B. B. (2014). Teaching genomic counseling: preparing the genetic counseling workforce for the genomic era. Journal of Genetic Counseling, 23(4), 445–451.CrossRefPubMedPubMedCentral
go back to reference Horowitz, M., Sundin, E., Zanko, A., & Lauer, R. (2001). Coping with grim news from genetic tests. Psychosomatics, 42(2), 100–105.CrossRefPubMed Horowitz, M., Sundin, E., Zanko, A., & Lauer, R. (2001). Coping with grim news from genetic tests. Psychosomatics, 42(2), 100–105.CrossRefPubMed
go back to reference Houwink, E. J., Henneman, L., Westerneng, M., van Luijk, S. J., Cornel, M. C., Dinant, J. G., et al. (2012). Prioritization of future genetics education for general practitioners: a Delphi study. Genetics in Medicine, 14(3), 323–329.CrossRefPubMedPubMedCentral Houwink, E. J., Henneman, L., Westerneng, M., van Luijk, S. J., Cornel, M. C., Dinant, J. G., et al. (2012). Prioritization of future genetics education for general practitioners: a Delphi study. Genetics in Medicine, 14(3), 323–329.CrossRefPubMedPubMedCentral
go back to reference Ingles, J., Yeates, L., & Semsarian, C. (2011). The emerging role of the cardiac genetic counselor. Heart Rhythm, 8(12), 1958–1962.CrossRefPubMed Ingles, J., Yeates, L., & Semsarian, C. (2011). The emerging role of the cardiac genetic counselor. Heart Rhythm, 8(12), 1958–1962.CrossRefPubMed
go back to reference Korf, B. R., Berry, A. B., Limson, M., Marian, A. J., Murray, M. F., O’Rourke, P. P., et al. (2014). Framework for development of physician competencies in genomic medicine: report of the competencies working Group of the Inter-Society Coordinating Committee for physician education in genomics. Genetics in Medicine, 16(11), 804–809.CrossRefPubMed Korf, B. R., Berry, A. B., Limson, M., Marian, A. J., Murray, M. F., O’Rourke, P. P., et al. (2014). Framework for development of physician competencies in genomic medicine: report of the competencies working Group of the Inter-Society Coordinating Committee for physician education in genomics. Genetics in Medicine, 16(11), 804–809.CrossRefPubMed
go back to reference Machini, K., Douglas, J., Braxton, A., Tsipis, J., & Kramer, K. (2014). Genetic counselors’ views and experiences with the clinical integration of genome sequencing. Journal of Genetic Counseling, 23(4), 496–505.CrossRefPubMed Machini, K., Douglas, J., Braxton, A., Tsipis, J., & Kramer, K. (2014). Genetic counselors’ views and experiences with the clinical integration of genome sequencing. Journal of Genetic Counseling, 23(4), 496–505.CrossRefPubMed
go back to reference Martin, D. K., Greenwood, H. L., & Nisker, J. (2010). Public perceptions of ethical issues regarding adult predictive genetic testing. Health Care Analysis, 18(2), 103–112.CrossRefPubMed Martin, D. K., Greenwood, H. L., & Nisker, J. (2010). Public perceptions of ethical issues regarding adult predictive genetic testing. Health Care Analysis, 18(2), 103–112.CrossRefPubMed
go back to reference Matloff, E. T., & Barnett, R. E. (2011). The growing role for genetic counseling in endocrinology. Current Opinion in Oncology, 23(1), 28–33.CrossRefPubMed Matloff, E. T., & Barnett, R. E. (2011). The growing role for genetic counseling in endocrinology. Current Opinion in Oncology, 23(1), 28–33.CrossRefPubMed
go back to reference McCabe, E., Guttmacher, A., Hegele, R., Holtzman, N., & McKenzie, A. (2001). Genetic Services in Ontario: Mapping the Future. A Report of the Provincial Advisory Committee on New Predictive Genetic Technologies. In O. M. O. H. A. L. T. Care (Ed.)). McCabe, E., Guttmacher, A., Hegele, R., Holtzman, N., & McKenzie, A. (2001). Genetic Services in Ontario: Mapping the Future. A Report of the Provincial Advisory Committee on New Predictive Genetic Technologies. In O. M. O. H. A. L. T. Care (Ed.)).
go back to reference McGowan, M. L., Glinka, A., Highland, J., Asaad, G., & Sharp, R. R. (2013). Genetics patients’ perspectives on clinical genomic testing. Personalized Medicine, 10(4), 339–347.CrossRefPubMedPubMedCentral McGowan, M. L., Glinka, A., Highland, J., Asaad, G., & Sharp, R. R. (2013). Genetics patients’ perspectives on clinical genomic testing. Personalized Medicine, 10(4), 339–347.CrossRefPubMedPubMedCentral
go back to reference Mendes, A. F., Santos, T. A., & Sousa, L. (2011). Experiencing genetic counselling for hereditary cancers: the client’s perspective. European Journal of Cancer Care (Engl), 20(2), 204–211.CrossRef Mendes, A. F., Santos, T. A., & Sousa, L. (2011). Experiencing genetic counselling for hereditary cancers: the client’s perspective. European Journal of Cancer Care (Engl), 20(2), 204–211.CrossRef
go back to reference Mills, R., & Haga, S. B. (2014). Genomic counseling: next generation counseling. Journal of Genetic Counseling, 23(4), 689–692.CrossRefPubMed Mills, R., & Haga, S. B. (2014). Genomic counseling: next generation counseling. Journal of Genetic Counseling, 23(4), 689–692.CrossRefPubMed
go back to reference O’Daniel, J. M. (2010). The prospect of genome-guided preventive medicine: a need and opportunity for genetic counselors. Journal of Genetic Counseling, 19(4), 315–327.CrossRefPubMed O’Daniel, J. M. (2010). The prospect of genome-guided preventive medicine: a need and opportunity for genetic counselors. Journal of Genetic Counseling, 19(4), 315–327.CrossRefPubMed
go back to reference Ormond, K. E. (2013). From genetic counseling to “genomic counseling”. Molecular Genetics & Genomic Medicine, 1(4), 189–193.CrossRef Ormond, K. E. (2013). From genetic counseling to “genomic counseling”. Molecular Genetics & Genomic Medicine, 1(4), 189–193.CrossRef
go back to reference Powell, K. P., Hasegawa, L., & McWalter, K. (2010). Expanding roles: a survey of public health genetic counselors. Journal of Genetic Counseling, 19(6), 593–605.CrossRefPubMed Powell, K. P., Hasegawa, L., & McWalter, K. (2010). Expanding roles: a survey of public health genetic counselors. Journal of Genetic Counseling, 19(6), 593–605.CrossRefPubMed
go back to reference Radford, C., Prince, A., Lewis, K., & Pal, T. (2014). Factors which impact the delivery of genetic risk assessment services focused on inherited cancer genomics: expanding the role and reach of certified genetics professionals. Journal of Genetic Counseling, 23(4), 522–530.CrossRefPubMed Radford, C., Prince, A., Lewis, K., & Pal, T. (2014). Factors which impact the delivery of genetic risk assessment services focused on inherited cancer genomics: expanding the role and reach of certified genetics professionals. Journal of Genetic Counseling, 23(4), 522–530.CrossRefPubMed
go back to reference Resta, R. G. (2006). Defining and redefining the scope and goals of genetic counseling. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C(4), 269–275.CrossRefPubMed Resta, R. G. (2006). Defining and redefining the scope and goals of genetic counseling. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C(4), 269–275.CrossRefPubMed
go back to reference Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., et al. (2006). A new definition of genetic counseling: National Society of genetic counselors’ task force report. Journal of Genetic Counseling, 15(2), 77–83.CrossRefPubMed Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., et al. (2006). A new definition of genetic counseling: National Society of genetic counselors’ task force report. Journal of Genetic Counseling, 15(2), 77–83.CrossRefPubMed
go back to reference Rosen, L. J., & Sunshine, E. (2010). Amendments to the regulated health professions act, 1991: major implications for health care professionals. Health Law in Canada, 30(4), 227–228.PubMed Rosen, L. J., & Sunshine, E. (2010). Amendments to the regulated health professions act, 1991: major implications for health care professionals. Health Law in Canada, 30(4), 227–228.PubMed
go back to reference Shields, A. E., Burke, W., & Levy, D. E. (2008). Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genetics in Medicine, 10(6), 404–414.CrossRefPubMedPubMedCentral Shields, A. E., Burke, W., & Levy, D. E. (2008). Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genetics in Medicine, 10(6), 404–414.CrossRefPubMedPubMedCentral
go back to reference Somers, A. E., Ware, S. M., Collins, K., Jefferies, J. L., He, H., & Miller, E. M. (2014). Provision of cardiovascular genetic counseling services: current practice and future directions. Journal of Genetic Counseling, 23(6), 976–983.CrossRefPubMed Somers, A. E., Ware, S. M., Collins, K., Jefferies, J. L., He, H., & Miller, E. M. (2014). Provision of cardiovascular genetic counseling services: current practice and future directions. Journal of Genetic Counseling, 23(6), 976–983.CrossRefPubMed
go back to reference Somerville, M. J., & Allingham-Hawkins, D. (2010). Regulation of genetic testing/service in Canada. In U. Kristoffersson, J. Schmidtke, & J. J. Cassiman (Eds.), Quality issues in clinical genetic services (pp. 83–90). Dordrecht, Heidelberg, London, New York: Springer. Somerville, M. J., & Allingham-Hawkins, D. (2010). Regulation of genetic testing/service in Canada. In U. Kristoffersson, J. Schmidtke, & J. J. Cassiman (Eds.), Quality issues in clinical genetic services (pp. 83–90). Dordrecht, Heidelberg, London, New York: Springer.
go back to reference Swanson, A., Ramos, E., & Snyder, H. (2014). Next generation sequencing is the impetus for the next generation of laboratory-based genetic counselors. Journal of Genetic Counseling, 23(4), 647–654.CrossRefPubMed Swanson, A., Ramos, E., & Snyder, H. (2014). Next generation sequencing is the impetus for the next generation of laboratory-based genetic counselors. Journal of Genetic Counseling, 23(4), 647–654.CrossRefPubMed
go back to reference Vanstone, M., Chow, W., Lester, L., Ainsworth, P., Nisker, J., & Brackstone, M. (2012). Recognizing BRCA gene mutation risk subsequent to breast cancer diagnosis in southwestern Ontario. Canadian Family Physician, 58(5), e258–e266.PubMedPubMedCentral Vanstone, M., Chow, W., Lester, L., Ainsworth, P., Nisker, J., & Brackstone, M. (2012). Recognizing BRCA gene mutation risk subsequent to breast cancer diagnosis in southwestern Ontario. Canadian Family Physician, 58(5), e258–e266.PubMedPubMedCentral
go back to reference Vig, H. S., & Wang, C. (2012). The evolution of personalized cancer genetic counseling in the era of personalized medicine. Familial Cancer, 11(3), 539–544.CrossRefPubMedPubMedCentral Vig, H. S., & Wang, C. (2012). The evolution of personalized cancer genetic counseling in the era of personalized medicine. Familial Cancer, 11(3), 539–544.CrossRefPubMedPubMedCentral
go back to reference Weil, J. (2002). Genetic counselling in the era of genomic medicine. As we move towards personalized medicine, it becomes more important to help patients understand genetic tests and make complex decisions about their health. EMBO Reports, 3(7), 590–593.CrossRefPubMedPubMedCentral Weil, J. (2002). Genetic counselling in the era of genomic medicine. As we move towards personalized medicine, it becomes more important to help patients understand genetic tests and make complex decisions about their health. EMBO Reports, 3(7), 590–593.CrossRefPubMedPubMedCentral
go back to reference Zetzsche, L. H., Kotzer, K. E., & Wain, K. E. (2014). Looking back and moving forward: an historical perspective from laboratory genetic counselors. Journal of Genetic Counseling, 23(3), 363–370.CrossRefPubMed Zetzsche, L. H., Kotzer, K. E., & Wain, K. E. (2014). Looking back and moving forward: an historical perspective from laboratory genetic counselors. Journal of Genetic Counseling, 23(3), 363–370.CrossRefPubMed
go back to reference Zhou, Y. Z., Wilde, A., Meiser, B., Mitchell, P. B., Barlow-Stewart, K., & Schofield, P. R. (2014). Attitudes of medical genetics practitioners and psychiatrists toward communicating with patients about genetic risk for psychiatric disorders. Psychiatric Genetics, 24(3), 94–101.CrossRefPubMed Zhou, Y. Z., Wilde, A., Meiser, B., Mitchell, P. B., Barlow-Stewart, K., & Schofield, P. R. (2014). Attitudes of medical genetics practitioners and psychiatrists toward communicating with patients about genetic risk for psychiatric disorders. Psychiatric Genetics, 24(3), 94–101.CrossRefPubMed
go back to reference Zierhut, H., & Austin, J. (2011). How inclusion of genetic counselors on the research team can benefit translational science. Science Translational Medicine, 3(74), 74cm77.CrossRef Zierhut, H., & Austin, J. (2011). How inclusion of genetic counselors on the research team can benefit translational science. Science Translational Medicine, 3(74), 74cm77.CrossRef
Metadata
Title
Risk for Patient Harm in Canadian Genetic Counseling Practice: It’s Time to Consider Regulation
Authors
Andrea L. Shugar
Nada Quercia
Christopher Trevors
Marina M. Rabideau
Sohnee Ahmed
Publication date
01-02-2017
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 1/2017
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-9983-4

Other articles of this Issue 1/2017

Journal of Genetic Counseling 1/2017 Go to the issue

ACKNOWLEDGMENTS

Thank You to Reviewers