Consent to tissue banking for research: qualitative study and recommendations

Carmen Soto; Carolyn Tarrant; Kathy Pritchard-Jones; Mary Dixon-Woods

doi:10.1136/archdischild-2011-301165

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> Volume 97, Issue 7
> Article

Arch Dis Child

2012;97:632-636 doi:10.1136/archdischild-2011-301165

Original articles

Consent to tissue banking for research: qualitative study and recommendations

¹Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, UK
²Department of Health Sciences, University of Leicester, Leicester, UK
³Institute of Child Health, University College London, London, UK

Correspondence to Mary Dixon-Woods, University of Leicester, Health Sciences, Adrian Building, Leicester LE1 7RH, UK; md11{at}le.ac.uk

Contributors CS conducted analysis of the dataset, undertook a literature review and prepared the first draft of the paper. CT assisted with analysis of the dataset, assisted with the literature review and made substantial contributions towards drafting of the manuscript. MD-W and KP-J designed the study, obtained funding, supervised data collection and analysis, and provided substantial contributions to the writing of the paper.

Accepted 22 February 2012
Published Online First 18 May 2012

Abstract

Objective To explore how families of children with cancer experience giving consent for tissue banking and to produce recommendations on good practice.

Design 79 participants from 42 families (41 mothers, 18 fathers, 20 children and young people with cancer) took part in semistructured interviews to explore their experiences of being approached for consent to tissue banking.

Setting Tertiary care facilities for childhood cancer.

Results Families are generally supportive of tissue banking, although they report that it may be difficult for them to consider all the implications when asked for consent. They typically do not want detailed information when consent is sought close to diagnosis, preferring to see tissue banking as part of routine practice. Families often recognise that their consent may not be fully informed, but are content to give consent based on their understanding at the time. Some may want a chance to go over the information and revisit their decision when things have settled.

Conclusions Families' views can inform practical recommendations for optimising the experience of consent for tissue banking. Current guidelines for obtaining consent should be revisited to take account of families' preferences.