Do the Japanese feel more suspicious about cancer registration than the British?

Background: Cancer registration is indispensable, providing useful statistical measures for the appropriate evaluation of cancer control programs and medical treatment or screening.

Methods: Following the British national survey on attitudes toward cancer registration, we conducted an investigation to correctly evaluate the general opinion of the Japanese population in this regard. We randomly recruited 3000 men and women aged 20-69 years from a research database.

Results: Only 4% of all respondents had heard about the cancer registry system before the investigation. However, 77% of respondents thought that cancer registration was useful. Forty-three percent of respondents answered, regardless of the strictness of the data protection, that privacy had been violated if the registration occurred without an individual explanation. Compared with the British survey results, Japanese people seemed to be more suspicious about the largely unknown system of cancer registry. Nonetheless, it is noteworthy that Japanese respondents did not show active opposition to cancer registration; they tended to choose "I don't know" instead of "no" to questions asking if they supported the registry system. Multivariate analysis showed that male sex, older age, and living in the southern region were the factors significantly associated with support for cancer registration.

Conclusions: We can seek society's understanding toward cancer registration by actively utilizing information from cancer registries, by using examples of how data are actually used that have wide appeal, and by educating the public on how the data are treated under the complete privacy policy.