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A National Survey of Public Attitudes toward Biobanks and Human Bioresource Donation

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The increasing use of human biospecimens and health data in research raises ethical and legalconcerns regarding privacy, consent, and ownership. This study examined public awareness,attitudes, and concerns related to biospecimen and health data in South Korea. A nationwide onlinesurvey was conducted with 500 adults, stratified by region, age, and gender. The questionnaireassessed awareness levels, donation experience, motivations, and concerns related to biospecimenand health data donation. Statistical analyses using SPSS (version 29) included chi-square tests acrossdemographic variables such as gender, age, education, and occupation. Awareness of biospecimendonation was moderate for biomedical research (55.2%) but lower for industrial research (42.2%). Awareness of biobanks was low (21.4%). Willingness to donate was higher for biomedical research(biospecimens 54.0%, health data 50.6%) than for industrial purposes (48.2%, 43.8%). The mainmotivations included humanitarian concerns and public benefit, while major concerns focused onprivacy and physical discomfort. Most participants (72.2%) preferred detailed consent. Men weremore willing to donate and expressed more favorable attitudes toward biospecimen and healthdata donation than women. The findings indicate moderate public awareness and willingness todonate biospecimens and health data, alongside persistent concerns about privacy, ownership, andcompensation. Enhancing ethical governance and public engagement is essential to building trust inbiobank-based research.

Abstract

The increasing use of human biospecimens and health data in research raises ethical and legalconcerns regarding privacy, consent, and ownership. This study examined public awareness,attitudes, and concerns related to biospecimen and health data in South Korea. A nationwide onlinesurvey was conducted with 500 adults, stratified by region, age, and gender. The questionnaireassessed awareness levels, donation experience, motivations, and concerns related to biospecimenand health data donation. Statistical analyses using SPSS (version 29) included chi-square tests acrossdemographic variables such as gender, age, education, and occupation. Awareness of biospecimendonation was moderate for biomedical research (55.2%) but lower for industrial research (42.2%). Awareness of biobanks was low (21.4%). Willingness to donate was higher for biomedical research(biospecimens 54.0%, health data 50.6%) than for industrial purposes (48.2%, 43.8%). The mainmotivations included humanitarian concerns and public benefit, while major concerns focused onprivacy and physical discomfort. Most participants (72.2%) preferred detailed consent. Men weremore willing to donate and expressed more favorable attitudes toward biospecimen and healthdata donation than women. The findings indicate moderate public awareness and willingness todonate biospecimens and health data, alongside persistent concerns about privacy, ownership, andcompensation. Enhancing ethical governance and public engagement is essential to building trust inbiobank-based research.

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