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Consent to tissue banking for research: qualitative study and recommendations
  1. Carmen Soto1,
  2. Carolyn Tarrant2,
  3. Kathy Pritchard-Jones3,
  4. Mary Dixon-Woods2
  1. 1Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, UK
  2. 2Department of Health Sciences, University of Leicester, Leicester, UK
  3. 3Institute of Child Health, University College London, London, UK
  1. Correspondence to Mary Dixon-Woods, University of Leicester, Health Sciences, Adrian Building, Leicester LE1 7RH, UK; md11{at}le.ac.uk

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.

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Footnotes

  • Funding Economic and Social Research Council.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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