Yang Ji Hyun, Kim Hannah, Lee Ilhak
Division of Medical Law and Ethics, Department of Medical Humanities and Social Sciences, Yonsei University College of Medicine, Seoul, South Korea.
Asian Institute for Bioethics and Health Law, Yonsei University, Seoul, South Korea.
Front Genet. 2023 Feb 23;14:1081812. doi: 10.3389/fgene.2023.1081812. eCollection 2023.
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. An online survey was conducted from March 3-9, 2021, using structured questionnaires addressed to 1,000 adults aged 20-59 years. 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. 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.
国家生物大数据项目（NPBBD）是韩国的一个生物大数据收集项目，预计将纳入100万韩国人的健康、基因组和生活日志数据。伦理、法律和社会影响研究是一项自2020年起开展的并行研究。作为该研究的一部分，开展了一项公众调查，以评估公众对参与计划的态度，例如公众委员会以及公众与研究人员之间沟通的门户网站。2021年3月3日至9日进行了一项在线调查，使用结构化问卷面向1000名年龄在20至59岁之间的成年人。一些受访者对参与表示积极态度（43.6%“有点积极”，14.3%“肯定积极”），而约三分之一（36.5%）表示态度中立。可能影响受访者参与意愿的积极因素包括获得健康信息（25.1%）、为癌症和罕见病研究做出贡献（21.9%）以及推动个性化医疗（21.5%）。相反，消极因素主要与对数据泄露风险（22.8%）、歧视（21.1%）、信息不足（13.5%）、得知患不治之症风险的可能性（12.5%）以及数据在行业中使用的可能性（11.3%）的担忧有关。在项目治理方面，受访者倾向于认识到公众参与将公众意见纳入项目设计的重要性。这些结果对参与者招募过程、公众参与策略以及数据库用户（学术界/行业、国内/海外）的可访问范围具有启示意义。
