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A Pilot Evaluation of an Educational Video to Support Consent to a Pediatric Malignancy Biobank
Eden G Robertson1,2, Rebecca Komesaroff3,4,5, David D Eisenstat3,5,6
1Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia.
Insights
An educational video aids biobanking consent for pediatric cancer patients. It was well-received by patients and health professionals, serving as a valuable discussion starter for informed consent in biobanking research.
Area of Science:
- Biobanking and Translational Research
- Pediatric Oncology
- Informed Consent Ethics
Background:
- Biobanking is crucial for research but presents ethical challenges, especially concerning informed consent.
- The Children's Cancer Centre Biobank sought to improve its consent process.
Purpose of the Study:
- To assess the acceptability and perceived benefits of an educational video for the biobanking informed consent process.
- To gather feedback from patients/caregivers and health professionals on the video's effectiveness.
Main Methods:
- A purpose-designed online survey was administered to participants who had previously consented to biobanking.
- Participants included patients/caregivers and health professionals involved in the consent process.
- Feedback was collected after participants viewed an educational video about the biobank.
Main Results:
- Most patients/caregivers felt informed but overwhelmed during the initial consent process.
- Both patients/caregivers and health professionals rated the video favorably for clarity and format.
- Health professionals highlighted the need for linguistic translations for diverse families.
- Patients/caregivers felt the video provided sufficient information to consider participation.
- Health professionals found the video most effective as a conversation starter.
Conclusions:
- The educational video is an acceptable and beneficial tool for the biobanking consent process.
- The video serves as a valuable precursor to formal, interactive consent discussions.
- Further research is needed to evaluate the video's impact on decision-making satisfaction and knowledge.
Abstract:
The collection of biological specimens is necessary to support basic and translational research. However, the complexity of biobanking introduces numerous ethical issues, particularly regarding informed consent. To evaluate the acceptability and perceived benefits of an educational video facilitating the consent process for the Children's Cancer Centre Biobank. We invited individuals who had previously consented to be (or their child to be) part of the Biobank, and health professionals who were involved in obtaining consent. Participants watched the video and completed a purpose-designed online survey. A total of 16 health professionals (invited = 30) and 15 patients/caregivers (invited = 127) participated. Most patients/caregivers felt informed about the Biobank at consent, however, noted how overwhelmed they were at the time and that they did not engage with the written information. Overall, both patients/caregivers and health professionals rated the video favorably regarding the information provided and format. Participants valued that it was simple and clear, with several health professionals noting the need for linguistic translations to better support the families they work with. Most patients/caregivers agreed that the video provided enough information to begin considering participation. This aligned with the health professionals' feedback that the video was most effective when used as a conversation starter to help formalize the written consent. Our findings suggest that our video is an acceptable and beneficial tool to assist in the Biobank consenting process, from both the perspective of decision-makers and health professionals obtaining consent. It appears particularly valuable as a precursor to an interactive, formal consent discussion. Further work is required to determine whether our video has a significant impact on outcomes such as decision-making satisfaction and knowledge, and to determine the value to adolescents.
