Abstract
This paper introduces methods used to communicate with participants in the ‘Biobank Japan Project (BBJP)’, which is a disease-focused biobanking project. The methods and their implications are discussed in the context of the ethical conduct of the biobanking project. Informed consent, which ensures the autonomous decisions of participants, is believed to be practically impossible for the biobanking project in general. Consequently, the concept of ‘trust’, which is ‘judgement and action in conditions of less than perfect information’, has been suggested to compensate for this limitation. As a means to maintain the trust participants feel for the project, this paper proposes communication with participants after receiving their consent. After describing the limitations of informed consent within the BBJP, based on a survey we conducted, we introduce our attempts to communicate with participants, discussing their implications as a means to compensate for the limitations of informed consent at the biobanking project.
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Acknowledgements
The research presented herein was supported by funding from the Ministry of Education, Culture, Sports, Science and Technology. We extend our gratitude to the participants of the BBJP, especially to those who participated in the survey and the events we have conducted. We also thank all the research coordinators of the project for their insight into communications with the participants based on their daily practices. We are grateful for the support and the suggestions from the committee on ELSI on our practices. Lastly, but not least, we express our appreciation to Professor Yusuke Nakamura for supporting this study.
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Watanabe, M., Inoue, Y., Chang, C. et al. For what am I participating? The need for communication after receiving consent from biobanking project participants: experience in Japan. J Hum Genet 56, 358–363 (2011). https://doi.org/10.1038/jhg.2011.19
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DOI: https://doi.org/10.1038/jhg.2011.19
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