![]() The establishment of such large-scale integrated bio-big data is expected to impact society in general, both in a positive and negative way. Data collected through this project will be permanently stored and used, unless the withdrawal of consent is explicitly indicated. This project has been operating in its pilot stage since 2020 and has been managed by four government agencies and 16 hospitals nationwide. The data collected includes clinical and genomic data and, in some cases, lifelogs. The Korean National Project of Bio-Big Data (NPBBD) is a public participation project aiming to recruit more than one million participants to build a database, in which, Korean health and genetic data are collected through voluntary participation, managed on a safe platform, for use by qualified researchers. These projects not only collect information and samples from a large number of participants, but they also plan to provide each participant with the results obtained from their analyses, forming a virtuous cycle by sharing the objectives achieved by the bio-big data project with individuals and society as a whole. In fact, several national bio-big data projects are already in operation, including the All-of-us Research Program in the US and the 100,000 Genome Project in the UK ( Collins and Varmus, 2015 Peplow, 2016 Barwell et al., 2018 Denny et al., 2019). Construction and utilization of a bio-big data platform are essential for precision medicine in determination of the optimal healthcare and treatment for individuals ( Obermeyer and Emanuel, 2016 Agrawal and Prabakaran, 2020). Bio-big data, which integrates clinical-medical information, genomic information, and lifelogs, can contribute to the development of data analysis and processing technology, which can provide new insight for the prevention and treatment of diseases ( Hamburg and Collins, 2010 Ashley, 2016 Prosperi et al., 2018 Suwinski et al., 2019). In terms of project governance, respondents tended to recognize the importance of public participation in incorporating public opinion into the project design.Ĭonclusion: 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.īig data is a key resource for research and development in the healthcare field, as well as in other areas of research ( Mehta et al., 2019). 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%). 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%). 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. Methods: An online survey was conducted from March 3–9, 2021, using structured questionnaires addressed to 1,000 adults aged 20–59 years. 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. The Ethical, Legal, and Social Implications study is a parallel study active since 2020. 2Asian Institute for Bioethics and Health Law, Yonsei University, Seoul, South Koreaīackground: 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.1Division of Medical Law and Ethics, Department of Medical Humanities and Social Sciences, Yonsei University College of Medicine, Seoul, South Korea.Ji Hyun Yang 1,2, Hannah Kim 1,2 and Ilhak Lee 1,2*
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