Public Perspectives on Consent for and Governance of Biobanking in Japan

• Published in: Journal of empirical research on human research ethics Vol. 19; no. 4-5; pp. 208 - 219
• Main Authors: Oikawa, Masanori, Takimoto, Yoshiyuki
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01.10.2024; Sage Publications Ltd
• Subjects: Adult; Aged; Attitude; Biological Specimen Banks; Biomedical Research - ethics; Female; Humans; Informed Consent; Japan; Male; Middle Aged; Public Opinion; Surveys and Questionnaires; Tissue Donors; Trust; Young Adult; Japan; trust; informed consent; broad consent; Japan; solidarity; biorepositories/biobanks; research ethics; survey research; tissue samples; reciprocity
• ISSN: 1556-2646; 1556-2654; 1556-2654
• DOI: 10.1177/15562646241286143

Through strengthened biobank governance, broad consent has been widely accepted as a means to replace donors’ discretion based on the information of individual research protocols. Trust and other ethical and social notions, such as reciprocity and solidarity, are key concepts that support biobank governance. The types of allowed broad consent are several; however, they remain unclear, and whether these ethical and social notions are associated with public attitudes toward the consent model is not fully understood. This quantitative study examined two hypotheses: narrower and limited broad consent are more accepted by the public, and acceptance rates for broad consent increase with established measures related to biobank governance. This analysis supported both hypotheses, implying that the limited type of broad consent should be considered an important option, and that a specific type of governance is critical in promoting trust, reciprocity, and solidarity between biobanks and the public.