Related Experiment Video
Updated: May 22, 2026
07:48
Working with Human Tissues for Translational Cancer Research
Published on: November 26, 2015
Consent to tissue banking for research: qualitative study and recommendations
Carmen Soto1, Carolyn Tarrant, Kathy Pritchard-Jones
1Department of Infection, Immunity and Infl ammation, University of Leicester, Leicester, UK.
Archives of Disease in Childhood
|May 22, 2012
Summary
Families generally support tissue banking for children with cancer but find it challenging to fully grasp implications during consent. They prefer simplified information near diagnosis, viewing tissue banking as routine, and may wish to revisit consent later.
Area of Science:
- Pediatric Oncology
- Bioethics
- Cancer Research
Background:
- Tissue banking is crucial for childhood cancer research.
- Understanding family consent experiences is vital for ethical practice.
Purpose of the Study:
- To explore family experiences with consent for pediatric cancer tissue banking.
- To develop recommendations for best practices in obtaining consent.
Main Methods:
- Qualitative study involving 79 participants from 42 families.
- Semistructured interviews were conducted with parents and children with cancer.
- Data collected from tertiary care facilities for childhood cancer.
Main Results:
- Families are generally supportive of tissue banking.
- Difficulty in comprehending all implications at the time of consent.
- Preference for simplified information near diagnosis, viewing it as routine.
- Willingness to consent based on current understanding, with potential desire to revisit decision.
Conclusions:
- Family perspectives are essential for optimizing the consent process for tissue banking.
- Existing guidelines for consent require revision to incorporate family preferences.
- Improving the consent experience can enhance participation in pediatric cancer research.
