2022 Volume 53 Issue 6 Pages 235-242
Registration of clinical research data in a database and utilization of the data, including industrial use, are currently promoted as a national policy. However, the research participants from whom the data is derived usually provide biological samples and information free of charge. Furthermore, research participants do not obtain any benefits even if the companies gain economic benefits from this data. Therefore, research participants may have a different awareness of the use of data from conventional non-commercial academic use. For promoting the industrial use of research data, research participants who provide samples and information are essential. Therefore, it is crucial to understand the general public's perceptions of who may become research participants in the future.
In March 2021, we conducted an internet survey of the general public in Japan, which included 2,202 respondents with 18.1％ response rate. The results showed the followings： more than 50％ of the respondents were reluctant to provide biological samples for industrial use； a certain percentage（12.4％‒34.0％）of the respondents believed that samples and data were attributed to donors； more than 50％ of the respondents thought companies should divide gained profits to the donors； 50.0％ of the respondents believed the companies should return earnings to the donors by money, and 22.9％‒37.0％ thought they should return profits to society. From these results, we found that researchers must provide clear explanations to the research participants in the informed consent process. In addition, the government also needs to develop legislation, such as clarifying the legal status of samples and data.
