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Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea

 Ji Hyun Yang  ;  Hannah Kim  ;  Ilhak Lee 
 FRONTIERS IN GENETICS, Vol.14 : 1081812, 2023-02 
Journal Title
Issue Date
ELSI ; big data ; data sharing ; precision medicine ; survey
Background: The National Project of Bio-Big Data (NPBBD) is a South Korean bio-big data collection project, expected to include health, genomic, and lifelog data of one million Koreans. The Ethical, Legal, and Social Implications study is a parallel study active since 2020. As part of the study, a public survey was conducted to evaluate public attitudes towards engagement schemes, such as public committees and web portals for communication between the public and researchers.

Methods: An online survey was conducted from March 3–9, 2021, using structured questionnaires addressed to 1,000 adults aged 20–59 years.

Results: Several respondents reported a positive attitude towards participation (43.6% “somewhat,” 14.3% “definitely”), whereas approximately one-third (36.5%) reported a neutral attitude. Positive factors that may affect the willingness of the respondents to participate included receiving health information (25.1%), contributing to research on cancer and rare diseases (21.9%), and advancing personalized medicine (21.5%). Conversely, negative factors were mainly associated with concerns regarding the risk of data leakage (22.8%), discrimination (21.1%), lack of information (13.5%), possibility of knowing the risk of being diagnosed with an incurable diseases (12.5%), and possibility of using data in industry (11.3%). In terms of project governance, respondents tended to recognize the importance of public participation in incorporating public opinion into the project design.

Conclusion: These results have implications for the participant recruitment process, public engagement strategies, and the scope of user (academics/industry, domestic/overseas) accessibility to the database.
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1. College of Medicine (의과대학) > Dept. of Medical Humanities and Social Sciences (인문사회의학교실) > 1. Journal Papers
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Yonsei Authors
Kim, Han Nah(김한나)
Yang, Ji Hyun(양지현)
Lee, Il Hak(이일학) ORCID logo https://orcid.org/0000-0002-6531-8752
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