A Pilot Evaluation of an Educational Video to Support Consent to a Pediatric Malignancy Biobank.

IF 1.6 4区生物学 Biopreservation and Biobanking Pub Date : 2024-05-27 DOI:10.1089/bio.2024.0011

Eden G Robertson, Rebecca Komesaroff, David D Eisenstat, Alexandra Robertson, Louise E Ludlow

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Abstract

Introduction: 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. Objective: To evaluate the acceptability and perceived benefits of an educational video facilitating the consent process for the Children's Cancer Centre Biobank. Methods: 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. Results: 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. Conclusion: 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.

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儿科恶性肿瘤生物库教育视频支持同意试点评估

导言：收集生物标本是支持基础研究和转化研究的必要条件。然而，生物样本库的复杂性带来了许多伦理问题，特别是有关知情同意的问题。目的评估儿童癌症中心生物样本库同意程序教育视频的可接受性和可感知的益处。方法：我们邀请了之前同意过儿童癌症中心生物样本库的个人：我们邀请了之前同意加入（或其子女同意加入）生物库的个人以及参与获得同意的医疗专业人员。参与者观看视频并填写一份专门设计的在线调查问卷。结果共有 16 名医护人员（邀请人数 = 30）和 15 名患者/护理人员（邀请人数 = 127）参与了调查。大多数患者/护理人员在同意时都感觉了解了生物样本库的相关信息，但也指出了自己当时的不知所措，并且没有参与书面信息的阅读。总体而言，患者/护理人员和医疗专业人员对视频提供的信息和形式都给予了好评。参与者认为视频简单明了，几位医疗专业人员指出需要语言翻译，以便更好地支持他们所服务的家庭。大多数患者/护理者都认为视频提供的信息足以让他们开始考虑参与。这与医疗专业人员的反馈意见一致，即视频在作为谈话的开端以帮助正式确定书面同意时最为有效。结论：我们的研究结果表明，无论是从决策者的角度还是从获得同意的医疗专业人员的角度来看，我们的视频都是一种可接受且有益的工具，有助于生物库同意过程。作为互动式正式同意讨论的前奏，它显得尤为重要。要确定我们的视频是否对决策满意度和知识等结果产生重大影响，并确定其对青少年的价值，还需要进一步的工作。

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来源期刊

Biopreservation and Biobanking Biochemistry, Genetics and Molecular Biology-General Biochemistry,Genetics and Molecular Biology

自引率

12.50%

发文量

114

期刊介绍： Biopreservation and Biobanking is the first journal to provide a unifying forum for the peer-reviewed communication of recent advances in the emerging and evolving field of biospecimen procurement, processing, preservation and banking, distribution, and use. The Journal publishes a range of original articles focusing on current challenges and problems in biopreservation, and advances in methods to address these issues related to the processing of macromolecules, cells, and tissues for research. In a new section dedicated to Emerging Markets and Technologies, the Journal highlights the emergence of new markets and technologies that are either adopting or disrupting the biobank framework as they imprint on society. The solutions presented here are anticipated to help drive innovation within the biobank community. Biopreservation and Biobanking also explores the ethical, legal, and societal considerations surrounding biobanking and biorepository operation. Ideas and practical solutions relevant to improved quality, efficiency, and sustainability of repositories, and relating to their management, operation and oversight are discussed as well.