Ethical issues regarding individual data collection and utilization in community health care programs

• Published in: Nihon kōshū eisei zasshi Vol. 45; no. 3; p. 251
• Main Authors: Nakamura, Y, Ojima, T, Kurosawa, M, Kikuchi, S, Inaba, Y, Niino, N, Nakamura, K
• Format: Journal Article
• Language: Japanese
• Published: Japan 01-03-1998
• Subjects: Community Health Services; Data Collection; Ethics, Professional; Informed Consent; Japan; Privacy; Public Health Nursing - education; Surveys and Questionnaires; Japan
• ISSN: 0546-1766

To understand the nature of ethical issues in community-based health care programs, we conducted a mail survey of subjects who were public health nurses employed by municipal governments. The questionnaire consisted of questions about data collection, usage, disclosure, and educational experience. In 1996 we received 536 completed questionnaires which were then analyzed. Regarding who should input data into computers, the number of those who considered that municipal offices other than public health nurses would be the most appropriate for the input of examination data was the largest, followed by those who felt that contracting out was best. Many of the public health nurses considered that they needed to obtain informed consent for collection, usage and disclosure of sensitive items, such as data on HIV infection. The number of those considering that they could not disclose results of examinations to other community-based specialists in health and welfare without the subject's agreement was very high. In health examination programs, the public health nurses requested information on date of birth and occupations, but there was some hesitation in requesting the latter information. Although about a half of subjects responded that they did not require data concerning the first sexual intercourse in cervical cancer screening, 90 percent asked breast feeding history in breast cancer screening. Approximately 90 percent gave results of the examination to participants personally through personal communication or mail. Of the respondents, 40 percent reported having had educational courses on ethics while the others did not. There were some responses that reminded us of the unsatisfactory level of understanding about ethical issues, which underlined the need to emphasize importance, of including this in educational curricula.