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American Academy of Pediatrics
Article

Factors Influencing Participation in a Population-based Biorepository for Childhood Heart Disease

Tanya Papaz, Mina Safi, Ashok-Kumar Manickaraj, Carly Ogaki, Jennifer Breaton Kyryliuk, Liz Burrill, Christine Dodge, Catherine Chant-Gambacort, Laura-Lee Walter, Herschel Rosenberg, Tapas Mondal, John Smythe, Jane Lougheed, Lynn Bergin, Elaine Gordon, David Chitayat, Erwin Oechslin and Seema Mital
Pediatrics November 2012, 130 (5) e1198-e1205; DOI: https://doi.org/10.1542/peds.2012-0687
Tanya Papaz
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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Mina Safi
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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Ashok-Kumar Manickaraj
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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Carly Ogaki
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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Jennifer Breaton Kyryliuk
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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Liz Burrill
bDepartment of Medicine, London Health Sciences Centre, London, Ontario, Canada;
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Christine Dodge
cDepartment of Paediatrics, Kingston General Hospital, Kingston, Ontario, Canada;
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Catherine Chant-Gambacort
dDepartment of Medicine, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada;
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Laura-Lee Walter
dDepartment of Medicine, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada;
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Herschel Rosenberg
bDepartment of Medicine, London Health Sciences Centre, London, Ontario, Canada;
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Tapas Mondal
dDepartment of Medicine, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada;
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John Smythe
cDepartment of Paediatrics, Kingston General Hospital, Kingston, Ontario, Canada;
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Jane Lougheed
eDepartment of Paediatrics, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada;
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Lynn Bergin
bDepartment of Medicine, London Health Sciences Centre, London, Ontario, Canada;
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Elaine Gordon
dDepartment of Medicine, Hamilton Health Sciences Centre, Hamilton, Ontario, Canada;
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David Chitayat
fPrenatal Diagnosis and Medical Genetics, Mount Sinai Hospital, Toronto, Ontario, Canada; and
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Erwin Oechslin
gDepartment of Medicine, University Health Network, Toronto, Ontario, Canada
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Seema Mital
aDepartment of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada;
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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.

KEY WORDS
  • biorepository
  • cardiac
  • congenital
  • heart disease
  • pediatric
  • consent
  • genetics
  • DNA
  • population-based
  • Abbreviations:
    CHD —
    congenital heart disease
    CMP —
    cardiomyopathy
    • Accepted July 2, 2012.
    • Copyright © 2012 by the American Academy of Pediatrics

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    Factors Influencing Participation in a Population-based Biorepository for Childhood Heart Disease
    Tanya Papaz, Mina Safi, Ashok-Kumar Manickaraj, Carly Ogaki, Jennifer Breaton Kyryliuk, Liz Burrill, Christine Dodge, Catherine Chant-Gambacort, Laura-Lee Walter, Herschel Rosenberg, Tapas Mondal, John Smythe, Jane Lougheed, Lynn Bergin, Elaine Gordon, David Chitayat, Erwin Oechslin, Seema Mital
    Pediatrics Nov 2012, 130 (5) e1198-e1205; DOI: 10.1542/peds.2012-0687

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    Factors Influencing Participation in a Population-based Biorepository for Childhood Heart Disease
    Tanya Papaz, Mina Safi, Ashok-Kumar Manickaraj, Carly Ogaki, Jennifer Breaton Kyryliuk, Liz Burrill, Christine Dodge, Catherine Chant-Gambacort, Laura-Lee Walter, Herschel Rosenberg, Tapas Mondal, John Smythe, Jane Lougheed, Lynn Bergin, Elaine Gordon, David Chitayat, Erwin Oechslin, Seema Mital
    Pediatrics Nov 2012, 130 (5) e1198-e1205; DOI: 10.1542/peds.2012-0687
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