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.
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: Lisa C A D'Alessandro; Saeed Al Turki; Ashok Kumar Manickaraj; Dorin Manase; Barbara J M Mulder; Lynn Bergin; Herschel C Rosenberg; Tapas Mondal; Elaine Gordon; Jane Lougheed; John Smythe; Koen Devriendt; Shoumo Bhattacharya; Hugh Watkins; Jamie Bentham; Sarah Bowdin; Matthew E Hurles; Seema Mital Journal: Genet Med Date: 2015-05-21 Impact factor: 8.822
Authors: Robert Lesurf; Abdelrahman Said; Oyediran Akinrinade; Jeroen Breckpot; Kathleen Delfosse; Ting Liu; Roderick Yao; Gabrielle Persad; Fintan McKenna; Ramil R Noche; Winona Oliveros; Kaia Mattioli; Shreya Shah; Anastasia Miron; Qian Yang; Guoliang Meng; Michelle Chan Seng Yue; Wilson W L Sung; Bhooma Thiruvahindrapuram; Jane Lougheed; Erwin Oechslin; Tapas Mondal; Lynn Bergin; John Smythe; Shashank Jayappa; Vinay J Rao; Jayaprakash Shenthar; Perundurai S Dhandapany; Christopher Semsarian; Robert G Weintraub; Richard D Bagnall; Jodie Ingles; Marta Melé; Philipp G Maass; James Ellis; Stephen W Scherer; Seema Mital Journal: NPJ Genom Med Date: 2022-03-14 Impact factor: 8.617
Authors: Alan Fung; Cedric Manlhiot; Sapna Naik; Herschel Rosenberg; John Smythe; Jane Lougheed; Tapas Mondal; David Chitayat; Brian W McCrindle; Seema Mital Journal: J Am Heart Assoc Date: 2013-05-31 Impact factor: 5.501
Authors: Dorin Manase; Lisa C A D'Alessandro; Ashok Kumar Manickaraj; Saeed Al Turki; Matthew E Hurles; Seema Mital Journal: BMC Med Genomics Date: 2014-12-11 Impact factor: 3.063
Authors: Jonathan P Troost; Jennifer Hawkins; Daniel R Jenkins; Debbie S Gipson; Matthias Kretzler; Osama El Shamy; Keith Bellovich; Kalyani Perumal; Zeenat Bhat; Susan Massengill; Susan Steigerwalt; Subramaniam Pennathur; Frank C Brosius; Crystal A Gadegbeku Journal: Kidney Int Rep Date: 2018-06-12
Authors: Rohini Chakravarthy; Sarah C Stallings; Michael Williams; Megan Hollister; Mario Davidson; Juan Canedo; Consuelo H Wilkins Journal: PLoS One Date: 2020-11-11 Impact factor: 3.752