title: Awareness of genetic counseling and perceptions of its purpose: a survey of the Canadian public.
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.
authors: Department of Medical Genetics, University of British Columbia, Vancouver, Canada.
authors: Melissa
authors: M
authors: Maio
authors: Prescilla
authors: P
authors: Carrion
authors: Elyse
authors: E
authors: Yaremco
authors: Jehannine C
authors: JC
authors: Austin
mesh_terms: D001364:Awareness; D002170:Canada; D003625:Data Collection; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D008297:Male; D011639:Public Opinion
references: J Community Genet. 2011 Dec;2(4):211-21
references: 22109874
references: BMJ. 1997 Jan 25;314(7076):281-3
references: 9022494
references: J Community Genet. 2011 Sep;2(3):135-46
references: 22109820
references: Soc Biol. 1974 Winter;21(4):332-9
references: 4619717
references: Br J Cancer. 2005 May 9;92(9):1671-8
references: 15841073
references: Genet Med. 2002 Jan-Feb;4(1):31-6
references: 11839956
references: J Genet Couns. 2006 Apr;15(2):77-83
references: 16761103
references: Diabetes Res Clin Pract. 2010 Jan;87(1):4-14
references: 19896746
references: J Med Genet. 1997 Mar;34(3):237-41
references: 9132497
references: Am J Med Genet. 2000 Sep 18;94(3):189-97
references: 10995504
references: Am J Med Genet A. 2005 Aug 15;137(1):27-35
references: 16007615
references: Am J Med Genet. 1988 Apr;29(4):815-27
references: 3400726
references: Br J Cancer. 1999 Apr;80(1-2):242-8
references: 10390003
references: Soc Sci Med. 2002 May;54(10):1463-70
references: 12061481
references: Breast Cancer Res. 2012 Mar 06;14(2):R37
references: 22394647
references: J Genet Couns. 2010 Oct;19(5):447-62
references: 20490636
references: J Genet Couns. 2008 Oct;17(5):434-51
references: 18791813
references: Hum Genet. 2010 Sep;128(3):249-60
references: 20549517
references: Clin Genet. 1996 Dec;50(6):462-9
references: 9147874
references: Patient Educ Couns. 2010 Jan;78(1):40-5
references: 19699604
references: Clin Genet. 2001 Nov;60(5):323-30
references: 11903329
references: Am J Med Genet A. 2011 Apr;155A(4):673-83
references: 21351244
references: Psychooncology. 2007 May;16(5):458-65
references: 16933207
references: Fam Cancer. 2012 Mar;11(1):85-95
references: 21901499
references: J Genet Couns. 2003 Jun;12(3):199-211
references: 14682354
references: J Genet Couns. 1999 Aug;8(4):191-216
references: 11658065