Paediatric biobanks: What makes them so unique?

被引:16
作者
Samuel, Julie [2 ]
Knoppers, Bartha M. [1 ]
Avard, Denise [1 ]
机构
[1] McGill Univ, Ctr Genom & Policy, Fac Med, Dept Human Genet, Montreal, PQ H3A 1A4, Canada
[2] FRSQ, Quebec City, PQ, Canada
关键词
biobank; children; parental consent; paediatric biobank; privacy; CHILDREN; PARTICIPANTS; ADOLESCENTS; CONSENT; PARENTS;
D O I
10.1111/j.1440-1754.2011.02072.x
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
Paediatric biobanks store and organise the biological material of children. They are an invaluable resource for the study of the development, health and behaviour of children. International norms for the management of adult biobanks exist, but paediatric biobanks require distinct policies to account for the needs of children, their general incapacity, and their intellectual development throughout the life of the biobank. Because of their particular nature we revisit the issues of consent, the return of research results, and privacy, and discuss how each could be modulated in the paediatric context. We recognize that such modifications entail further financial and logistical complications but maintain that it is essential that paediatric biobanks consider these issues and adapt their biobanks management policies accordingly, rather than extrapolate the current adult-based norms and jeopardise the rights of child participants.
引用
收藏
页码:E1 / E3
页数:3
相关论文
共 14 条
[1]  
[Anonymous], 2007, POP BIOB LEX
[2]  
[Anonymous], 2000, ILA REP C, V69, P137
[3]   Coding and consent: Moral challenges of the database project in Iceland [J].
Arnason, V .
BIOETHICS, 2004, 18 (01) :27-49
[4]   Disclosure of Research Results from Cancer Genomic Studies: State of the Science [J].
Dressler, Lynn G. .
CLINICAL CANCER RESEARCH, 2009, 15 (13) :4270-4276
[5]   The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer [J].
Fernandez, C. V. ;
Santor, D. ;
Weijer, C. ;
Strahlendorf, C. ;
Moghrabi, A. ;
Pentz, R. ;
Gao, J. ;
Kodish, E. .
PEDIATRIC BLOOD & CANCER, 2007, 48 (04) :441-446
[6]   Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer [J].
Fernandez, Conrad Vincent ;
Gao, Jun ;
Strahlendorf, Caron ;
Moghrabi, Albert ;
Pentz, Rebecca Davis ;
Barfield, Raymond Carlton ;
Baker, Justin Nathaniel ;
Santor, Darcy ;
Weijer, Charles ;
Kodish, Eric .
JOURNAL OF CLINICAL ONCOLOGY, 2009, 27 (06) :878-883
[7]   Children and Population Biobanks [J].
Gurwitz, David ;
Fortier, Isabel ;
Lunshof, Jeantine E. ;
Knoppers, Bartha Maria .
SCIENCE, 2009, 325 (5942) :818-819
[8]   Assessing the Privacy Risks of Data Sharing in Genomics [J].
Heeney, C. ;
Hawkins, N. ;
de Vries, J. ;
Boddington, P. ;
Kaye, J. .
PUBLIC HEALTH GENOMICS, 2011, 14 (01) :17-25
[9]   The Storage and Use of Biological Tissue Samples from Minors for Research: A Focus Group Study [J].
Hens, K. ;
Nys, H. ;
Cassiman, J. -J. ;
Dierickx, K. .
PUBLIC HEALTH GENOMICS, 2011, 14 (02) :68-76
[10]   Broadening consent-and diluting ethics? [J].
Hofmann, B. .
JOURNAL OF MEDICAL ETHICS, 2009, 35 (02) :125-129