title: Factors influencing participation in a population-based biorepository for childhood heart disease.
abstract: BACKGROUND
  Consenting minors for genetics research and biobanking involves ethical and social challenges. We examined factors influencing participation rates in a population-based biorepository for childhood heart disease.
  
  
  METHODS
  Individuals were prospectively enrolled across 7 centers in Ontario by using a standardized consent form. Individuals were approached for consent for the donation of blood/saliva (DNA), tissue, and skin from the affected individual for future genomics and stem cell research. Consent rates were compared between pediatric and adult patients and factors affecting consent were analyzed by using multiple logistic regression analysis.
  
  
  RESULTS
  From 2008 to 2011, 3637 patients were approached. A total of 2717 pediatric patients consented (90% consent rate); mean age was 8.5 ± 5.8 years (57% male; 76% white). A total of 561 adult patients consented (92% consent rate, P = .071 versus pediatric). Factors associated with lower pediatric consent rates included younger age, race, absence of complex defects, and location of consent; these were not associated with adult consent rates. Leading causes for refusal of consent were lack of interest in research (43%), overwhelmed clinically (14%), and discomfort with genetics (11%). Concerns related to privacy, insurability, indefinite storage, and ongoing access to medical records were not the leading causes for refusal.
  
  
  CONCLUSIONS
  The high pediatric consent rate (90%) was comparable with that of adults. Ethical, social, or legal issues were not the leading reasons for refusal of consent.
authors.affiliation: Department of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Tanya
authors.initials: T
authors.lastname: Papaz
authors.forename: Mina
authors.initials: M
authors.lastname: Safi
authors.forename: Ashok-Kumar
authors.initials: AK
authors.lastname: Manickaraj
authors.forename: Carly
authors.initials: C
authors.lastname: Ogaki
authors.forename: Jennifer
authors.initials: J
authors.lastname: Breaton Kyryliuk
authors.forename: Liz
authors.initials: L
authors.lastname: Burrill
authors.forename: Christine
authors.initials: C
authors.lastname: Dodge
authors.forename: Catherine
authors.initials: C
authors.lastname: Chant-Gambacort
authors.forename: Laura-Lee
authors.initials: LL
authors.lastname: Walter
authors.forename: Herschel
authors.initials: H
authors.lastname: Rosenberg
authors.forename: Tapas
authors.initials: T
authors.lastname: Mondal
authors.forename: John
authors.initials: J
authors.lastname: Smythe
authors.forename: Jane
authors.initials: J
authors.lastname: Lougheed
authors.forename: Lynn
authors.initials: L
authors.lastname: Bergin
authors.forename: Elaine
authors.initials: E
authors.lastname: Gordon
authors.forename: David
authors.initials: D
authors.lastname: Chitayat
authors.forename: Erwin
authors.initials: E
authors.lastname: Oechslin
authors.forename: Seema
authors.initials: S
authors.lastname: Mital
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks; D002648:Child; D002675:Child, Preschool; D005260:Female; D006331:Heart Diseases; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000706:statistics & numerical data*; D011446:Prospective Studies; D055815:Young Adult