Factors influencing participation in a population-based biorepository for childhood heart disease

Pediatrics

Volumn 130, Issue 5, 2012, Pages

  Papaz, Tanya ^a   Safi, Mina ^a   Manickaraj, Ashok Kumar ^a   Ogaki, Carly ^a   Kyryliuk, Jennifer Breaton ^a   Burrill, Liz ^b   Dodge, Christine ^c   Chant Gambacort, Catherine ^d   Walter, Laura Lee ^d   Rosenberg, Herschel ^b   Mondal, Tapas ^d   Smythe, John ^c   Lougheed, Jane ^e   Bergin, Lynn ^b   Gordon, Elaine ^d   Chitayat, David ^f   Oechslin, Erwin ^g   Mital, Seema ^a  

^a HOSPITAL FOR SICK CHILDREN   (Canada)

^b LONDON HEALTH SCIENCES CENTRE   (Canada)

^c KINGSTON GENERAL HOSPITAL   (Canada)

^d HAMILTON HEALTH SCIENCES   (Canada)

^e CHILDREN S HOSPITAL OF EASTERN ONTARIO   (Canada)

^f MOUNT SINAI HOSPITAL   (Canada)

^g UNIVERSITY HEALTH NETWORK   (Canada)

Author keywords

Biorepository; Cardiac; Congenital; Consent; DNA; Genetics; Heart disease; Pediatric; Population based

Indexed keywords

AGE; AGE DISTRIBUTION; ARTICLE; BIOETHICS; BLOOD DONOR; CANADA; CHILD; CLINICAL DATA REPOSITORY; DONOR; FEMALE; GENETIC ANALYSIS; GEOGRAPHIC DISTRIBUTION; HEART DISEASE; HUMAN; INFORMED CONSENT; LEGAL ASPECT; MAJOR CLINICAL STUDY; MALE; MEDICAL RESEARCH; ONSET AGE; PARENTAL CONSENT; PATIENT ATTITUDE; PATIENT PARTICIPATION; POPULATION RESEARCH; PRIORITY JOURNAL; PROSPECTIVE STUDY; RACE DIFFERENCE; REFUSAL TO PARTICIPATE; SALIVA ANALYSIS; SCHOOL CHILD; SOCIAL ASPECT; STANDARDIZATION; STEM CELL RESEARCH;

ADOLESCENT; ADULT; AGE DISTRIBUTION; AGED; AGED, 80 AND OVER; BIOLOGICAL SPECIMEN BANKS; CHILD; CHILD, PRESCHOOL; FEMALE; HEART DISEASES; HUMANS; INFANT; MALE; MIDDLE AGED; PATIENT PARTICIPATION; PROSPECTIVE STUDIES; YOUNG ADULT;

EID: 84868618373     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2012-0687     Document Type: Article

References (21)

1. Stegmayr B, Asplund K. Genetic research on blood samples stored for years in biobanks. Most people are willing to provide informed consent [in Swedish]. Lakartidningen. 2003; 100(8):618-620 (Pubitemid 37463694)
2. Burke W, Diekema DS. Ethical issues arising from the participation of children in genetic research. J Pediatr. 2006;149(suppl 1): S34-S38
3. Ross LF. Ethical and policy issues in pediatric genetics. Am J Med Genet C Semin Med Genet. 2008;148C(1):1-7 (Pubitemid 351294846)
4. Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS. Pediatric biobanks: approaching informed consent for continuing research after children grow up. J Pediatr. 2009;155(4):578-583
5. Kaufman D, Geller G, Leroy L, Murphy J, Scott J, Hudson K. Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. Am J Med Genet C Semin Med Genet. 2008;148C(1):31-39 (Pubitemid 351294850)
6. Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics. 2010; 13(6):368-377
7. Samuel J, Ries NM, Malkin D, Knoppers BM. Biobanks and longitudinal studies: where are the children? GenEdit. 2008;6(3):1-8
8. Ries NM, LeGrandeur J, Caulfield T. Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries. BMC Med Ethics . 2010;11(1):4
9. Vander Velde ET, Vriend JWJ, Mannens MMAM, Uiterwaal CSPD, Brand R, Mulder BJM. CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: rationale, design and first results. Eur J Epidemiol. 2005;20(6):549-557 (Pubitemid 40933933)
10. Glickman SW, Anstrom KJ, Lin L, et al. Challenges in enrollment of minority, pediatric, and geriatric patients in emergency and acute care clinical research. Ann Emerg Med. 2008;51(6):775-780.e3
11. Sanner JE, Frazier L. Factors that influence characteristics of genetic biobanks. J Nurs Scholarsh. 2007;39(1):25 -29
12. McQuillan GM, Pan Q, Porter KS. Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experience. Genet Med. 2006;8(6):354-360 (Pubitemid 44297306)
13. Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health. 2006;96(11):1971-1978 (Pubitemid 44655922)
14. Pulley JM, Brace MM, Bernard GR, Masys DR. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank. 2008;9(1):55-65 (Pubitemid 351279801)
15. Caulfield T, Upshur REG, Daar A. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics. 2003;4:E1
16. Rumball S, McCall Smith A. International Bioethics Committee of UNESCO. Draft Report on Collection, Treatment, Storage, and Use of Genetic Data. 2001;8(1):21-50. http://unesdoc. unesco.org/images/0012/001292/129253e.pdf
17. Greene CL. Storage, use of newborn screening samples raise complex issues. AAP News. 2010;31:16
18. Mello MM, Wolf LE. The Havasupai Indian tribe case-lessons for research involving stored biologic samples. N Engl J Med. 2010; 363(3):204-207
19. Samuel J, Knoppers BM, Avard D. Paediatric biobanks: what makes them so unique? J Pediatr Child Health . 2012;48(2):1 - 3
20. Neidich AB, Joseph JW, Ober C, Ross LF. Empirical data about women 's attitudes towards a hypothetical pediatric biobank. Am J Med Genet A . 2008;146(3):297 - 304
21. Mongoven AM, Solomon S. Biobanking: shifting the analogy from consent to surrogacy. Genet Med . 2012;14(2):183-188