Abstract
Genetic counseling can result in better outcomes when clients understand what to expect, and at least theoretically, at some point in their lifespan, anyone could be referred for or benefit from genetic counseling. Thus, in order to identify (and ultimately address) issues around awareness of genetic counseling and perceptions of its purpose, we surveyed the Canadian general population. We acquired 1,000 telephone numbers corresponding to a demographically representative sample of Canada from Survey Sampling International, and invited individuals to participate in a telephone-based survey. We administered a purpose-designed survey (in either French or English) comprising questions regarding: demographics, whether or not the individual had heard of genetic counseling, and 15 Likert scale-rated (strongly disagree—strongly agree) items about the possible purposes of genetic counseling. Responses to these 15 items were used to generate a total “knowledge score”. Of the 1,000 numbers, n = 372 could not be reached, and the survey was successfully administered to n = 188 individuals (response rate 30 %). Most respondents (n = 129, 69 %) had not heard of genetic counseling, and substantial proportions thought that genetic counseling aims to prevent genetic diseases and abnormalities, help couples have children with desirable characteristics, and help people to understand their ancestry. These data could be used to inform the strategy for development of future awareness efforts, and as a baseline from which to measure their effects.
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References
Albada, A., Van Dulmen, S., Bensing, J. M., & Ausems, M. G. (2012a). Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counseling, a randomized controlled trial. Breast Cancer Research, 14(2), R37. doi:10.1186/bcr3133.
Albada, A., Van Dulmen, S., Lindhout, D., Bensing, J. M., & Ausems, M. G. (2012b). A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counseling. Familial Cancer, 11(1), 85–95. doi:10.1007/s10689-011-9479-1.
Babul-Hirji, R., Hewson, S., & Frescura, M. (2010). A sociolinguistic exploration of genetic counseling discourse involving a child with a new genetic diagnosis. Patient Education and Counseling, 78(1), 40–45. doi:10.1016/j.pec.2009.06.007.
Bernhardt, B. A., Biesecker, B. B., & Mastromarino, C. L. (2000). Goals, benefits, and outcomes of genetic counseling: client and genetic counselor assessment. American Journal of Medical Genetics, 94(3), 189–197.
Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60(5), 323–330.
Brown, R., Butow, P. N., Boyer, M. J., & Tattersall, M. H. (1999). Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking. British Journal of Cancer, 80(1–2), 242–248. doi:10.1038/sj.bjc.6690346.
Hallowell, N., Murton, F., Statham, H., Green, J. M., & Richards, M. P. (1997). Women’s Need for information before attending genetic counseling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. British Medical Journal, 314(7076), 281–283.
Joseph, G., Beattie, M. S., Lee, R., Braithwaite, D., Wilcox, C., Metrikin, M., & Luce, J. (2010). Pre-counseling education for low literacy women at risk of hereditary breast and ovarian cancer (HBOC): patient experiences using the cancer risk education intervention tool (CREdIT). Journal of Genetic Counseling, 19(5), 447–462. doi:10.1007/s10897-010-9303-3.
Kasparian, N. A., Wakefield, C. E., & Meiser, B. (2007). Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. Journal of Genetic Counseling, 16(6), 693–712.
Meiser, B., & Halliday, J. L. (2002). What is the impact of genetic counseling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Social Science & Medicine, 54(10), 1463–1470.
Meiser, B., Irle, J., Lobb, E., & Barlow-Stewart, K. (2008). Assessment of the content and process of genetic counseling: a critical review of empirical studies. Journal of Genetic Counseling, 17(5), 434–451. doi:10.1007/s10897-008-9173-0.
Metcalfe, A., Werrett, J., Burgess, L., & Clifford, C. (2007). Psychosocial impact of the lack of information given at referral about familial risk for cancer. Psycho-Oncology, 16(5), 458–465. doi:10.1002/pon.1081.
Michie, S., Marteau, T. M., & Bobrow, M. (1997). Genetic counseling: the psychological impact of meeting patients’ expectations. Journal of Medical Genetics, 34(3), 237–241.
Osawa, M., Muto, A., Shiraiwa, Y., Hirasawa, K., Yoshida, R., Murasugi, H., Shirai, Y. (1993). Public perceptions of genetic counseling. Intractable Neurological Disorders, Human Genome Research and Society, 226–234.
Payne, K., Nicholls, S., McAllister, M., MacLeod, R., Donnai, D., & Davies, L. M. (2008). Outcome measurement in clinical genetics services: a systematic review of validated measures. Value in Health, 11(3), 497–508
Pieterse, A. H., Ausems, M. G., Van Dulmen, A. M., Beemer, F. A., & Bensing, J. M. (2005a). Initial cancer genetic counseling consultation: change in counselees’ cognitions and anxiety, and association with addressing their needs and preferences. American Journal of Medical Genetics, 137(1), 27–35. doi:10.1002/ajmg.a.30839.
Pieterse, A. H., van Dulmen, A. M., Ausems, M. G., Beemer, F. A., & Bensing, J. M. (2005b). Communication in cancer genetic counseling: does it reflect counselees’ previsit needs and preferences? British Journal of Cancer, 92(9), 1671–1678. doi:10.1038/sj.bjc.6602570.
Reed, S. C. (1975). A short history of genetic counseling. Social Biology, 21, 332–339.
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., & Williams, J. L. (2006). A new definition of genetic counseling: National Society of Genetic Counselors’ Task Force report. Journal of Genetic Counseling, 15(2), 77–83.
Su, Y., Howard, H. C., & Borry, P. (2011). Users’ motivations to purchase direct-to-consumer genome-wide testing: exploratory study of personal stories. Journal of Community Genetics, 2(3), 135–146.
Weil, J. (2003). Psychosocial genetic counseling in the post-nondirective era: a point of view. Journal of Genetic Counseling, 12(3), 199–211.
Wertz, D. C., & Fletcher, J. C. (1988). Ethics and medical genetics in the United States: a national survey. American Journal of Medical Genetics, 29(4), 815–827.
Acknowledgements
This research was undertaken, in part, thanks to funding from the Canada Research Chairs program. The authors thank Anna Cantor, Dana Young and Sevil Rahnama for their help with administering the survey, Emmanuelle Souzeau for translation of the survey to French, the UBC Genetic Counseling program for funding, and NSGC for providing copies of the pamphlet “Making sense of your genes: A guide to genetic counseling”. JA was supported by the Michael Smith Foundation for Health Research, the Canadian Institutes of Health Research, and BC Mental Health and Addictions Services.
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Maio, M., Carrion, P., Yaremco, E. et al. Awareness of Genetic Counseling and Perceptions of its Purpose: A Survey of the Canadian Public. J Genet Counsel 22, 762–770 (2013). https://doi.org/10.1007/s10897-013-9633-z
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DOI: https://doi.org/10.1007/s10897-013-9633-z