ELSIcon2022 • Paper • May 27, 2022
Ilhak Lee, Hyun-Young Park, Chai Hee Youl, Jeong Eun Kim, Hannah Kim, Jihyun Yang
This survey is aimed at identifying the perception of the general public and level of social consensus about the Korean National Bio Big Data(NBBD) project which aims to collect a total of one million participants. Data to be collected include clinical information; genomic data; and, in some cases, lifelog as well.
Materials and Methods
This survey was conducted online for 1,000 adults aged 20 to 59, using structured questionnaires. It took seven days, from March 3 to 9, 2021, to complete. The survey questionnaire consists of 24 items in 4 parts: 1) awareness and expectations toward the project; 2) decision-making factors for participation; 3) participant communication and public engagement methods; 4) Data sharing and usages.
A number of respondents stated a positive attitude towards participation(43.6% ‘somewhat, 14.3% ‘definitely’) whereas around a third(36.5%) showed a neutral attitude. positive factors that may affect respondents’ willingness to participate are receiving healthcare information(33.8%); contributing to cancer and rare diseases research(25%); advancing personalized medicine(13.1%). On the other hand, negative factors are mainly related to privacy, discrimination, right not to know, and lack of information. In terms of project governance, respondents tend to acknowledge the importance of public engagement so as to incorporate public opinion into project design.
Discussion and Conclusion
These results have implications for 1) participant recruitment process; 2) public engagement strategies; 3) the scope of accessible users(academics/industry, domestic/overseas) to the database.