title: Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.
abstract: BACKGROUND
  Studies in the USA report differences in opinion among parents of different ethnic groups toward genetic testing for their child; however, there are no studies that address this issue in the diverse ethnic and immigrant population in Canada.
  
  
  OBJECTIVE
  This study aims to determine whether ethnicity and immigration status influences parental interest in clinical genetic testing for a potentially progressive kidney disease.
  
  
  METHODS
  This is a cross-sectional study.
  
  
  METHODS
  Participants were recruited from the Greater Toronto Area, Canada.
  
  
  METHODS
  The study included 320 parents of children ages 1-18 years with nephrotic syndrome enrolled in the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) observational cohort study.
  
  
  METHODS
  Demographic, ethnicity, immigration, and child specific factors as well as interest in genetic testing were collected through self-reported questionnaires administered at baseline study visit.
  
  
  METHODS
  Logistic regression models were used to examine association of ethnicity and immigration status with interest in genetic testing.
  
  
  RESULTS
  The majority of parents (85 %) were interested in genetic testing for their child. South Asian and East/Southeast Asian parents had 74 and 76 % lower odds of agreeing to genetic testing when compared to Europeans (odds ratio (OR) 0.26, 95 % confidence interval (CI) 0.10-0.68; OR 0.24, 95 % CI 0.07-0.79, respectively) after controlling for age and sex of child, age and education level of parent, initial steroid resistance, and duration of time in Canada. Immigrants to Canada also had significantly lower odds (OR 0.29, 95 % CI 0.12-0.72) of agreeing to genetic testing after similar adjustment. Higher education level was not associated with greater interest in genetic testing (OR 1.24, 95 % CI 0.64-2.42).
  
  
  CONCLUSIONS
  Participants have already agreed to aggregate genetic testing for research purposes as part of enrolment in INSIGHT study.
  
  
  CONCLUSIONS
  While majority of parents were interested in genetic testing for their child, immigrants, particularly South Asians and East/Southeast Asians, were more likely to decline genetic testing. Genetic counseling needs to be tailored to address specific concerns in these parental groups to maximize informed decision-making in the clinical setting.
  
  
  BACKGROUND
  ClinicalTrials.gov, NCT01605266.
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Karlota
authors.initials: K
authors.lastname: Borges
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Jovanka
authors.initials: J
authors.lastname: Vasilevska-Ristovska
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Neesha
authors.initials: N
authors.lastname: Hussain-Shamsy
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Viral
authors.initials: V
authors.lastname: Patel
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Tonny
authors.initials: T
authors.lastname: Banh
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
authors.forename: Diane
authors.initials: D
authors.lastname: Hebert
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
authors.forename: Rachel J
authors.initials: RJ
authors.lastname: Pearl
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada.
authors.forename: Seetha
authors.initials: S
authors.lastname: Radhakrishnan
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
authors.forename: Tino D
authors.initials: TD
authors.lastname: Piscione
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
authors.forename: Christoph P B
authors.initials: CP
authors.lastname: Licht
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
authors.forename: Valerie
authors.initials: V
authors.lastname: Langlois
authors.affiliation: Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada.
authors.forename: Leo
authors.initials: L
authors.lastname: Levin
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada ; Dalla Lana School of Public Health, Toronto, Canada.
authors.forename: Lisa
authors.initials: L
authors.lastname: Strug
authors.affiliation: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada ; Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada ; Dalla Lana School of Public Health, Toronto, Canada.
authors.forename: Rulan S
authors.initials: RS
authors.lastname: Parekh
keywords: Caregiver; Decision-making; Genetic testing; Nephrotic syndrome; Pediatric; Steroid resistant nephrotic syndrome