Literature DB >> 21535284

Paediatric biobanks: what makes them so unique?

Julie Samuël1, Bartha M Knoppers, Denise Avard.   

Abstract

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.
© 2011 The Authors. Journal of Paediatrics and Child Health © 2011 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Entities:  

Mesh:

Year:  2011        PMID: 21535284     DOI: 10.1111/j.1440-1754.2011.02072.x

Source DB:  PubMed          Journal:  J Paediatr Child Health        ISSN: 1034-4810            Impact factor:   1.954


  11 in total

1.  Regulating biobanking with children's tissue: a legal analysis and the experts' view.

Authors:  Elcke J Kranendonk; M Corrette Ploem; Raoul C M Hennekam
Journal:  Eur J Hum Genet       Date:  2015-04-15       Impact factor: 4.246

2.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

3.  Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions.

Authors:  Ashli A Owen-Smith; Musu M Sesay; Frances L Lynch; Maria Massolo; Hilda Cerros; Lisa A Croen
Journal:  Public Health Genomics       Date:  2020-07-22       Impact factor: 2.000

4.  Willingness of women to participate in obstetrical and pediatric research involving biobanks.

Authors:  Renate D Savich; Beth B Tigges; Lisbeth Iglesias Rios; Joanne McCloskey; Kristine Tollestrup; Robert D Annett
Journal:  J Community Genet       Date:  2019-11-28

5.  Clarifying assent in pediatric research.

Authors:  Noor A A Giesbertz; Annelien L Bredenoord; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2013-06-12       Impact factor: 4.246

6.  The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.

Authors:  Martha Driessnack; Sandra Daack-Hirsch; Nancy Downing; Alyson Hanish; Lisa L Shah; Mohammed Alasagheirin; Christian M Simon; Janet K Williams
Journal:  J Community Genet       Date:  2013-04-10

Review 7.  Paediatric biobanking: Dutch experts reflecting on appropriate legal standards for practice.

Authors:  Elcke J Kranendonk; Raoul C Hennekam; M Corrette Ploem
Journal:  Eur J Pediatr       Date:  2016-11-19       Impact factor: 3.183

8.  Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.

Authors:  Kiran Pohar Manhas; Shawn X Dodd; Stacey Page; Nicole Letourneau; Carol E Adair; Xinjie Cui; Suzanne C Tough
Journal:  BMC Med Inform Decis Mak       Date:  2018-11-12       Impact factor: 2.796

9.  Ethics of children's participation in a Saudi biobank: an exploratory survey.

Authors:  Ghiath Alahmad; Tamer Hifnawy; Kris Dierickx
Journal:  Genet Med       Date:  2015-12-10       Impact factor: 8.822

10.  Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting.

Authors:  Conrad V Fernandez; Caron Strahlendorf; Denise Avard; Bartha M Knoppers; Colleen O'Connell; Eric Bouffet; David Malkin; Nada Jabado; Kym Boycott; Poul H Sorensen
Journal:  Genet Med       Date:  2013-01-31       Impact factor: 8.822

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