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Scandinavian Journal of Public Health
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Informed consent in China: quality of information provided to participants in a research project

Niels Lynöe

Medical Ethics, Umeå University and LIME, Karolinska Institute, niels.lynoe{at}medicine.umu.se

Mikael Sandlund

Department of Clinical Science/Psychiatry, Umea University

Lars Jacobsson

Department of Clinical Science/Psychiatry, Umea University

Gunnar Nordberg

Environmental Medicine, Umea University

Taiyi Jin

Environmental Medicine, Umea University, Shanghai Medical University, China

Aims: A study was carried out of informed consent strategies in an epidemiological project approved by the regional research ethics committees in Sweden and China and conducted in three areas south-west of Shanghai. Methods: All participants in the epidemiological project (EP) were included in the research ethical study (RES), which was conducted as a questionnaire-based interview survey in the three areas. Answers were collected by five field interviewers. Results: All participants included answered the questionnaire. Almost all perceived the information provided as rather good or quite good. However, a majority (on average 76%) had the impression that the EP was part of routine healthcare measures, and not a research project. Almost all participants felt free to abstain from participation although 38% in area II stated that they had not been informed about freedom to abstain from participation. A large proportion of participants did not fully understand the nature of the EP. However, almost all participants stated that they would agree to participate in a similar study in the future. Conclusion: Although informed consent procedures are supposed to be internationally applicable our study illustrates that it is not always easy to convey information and obtain consent in the present study setting.

Key Words: informed consent • research ethics • epidemiological research.

Scandinavian Journal of Public Health, Vol. 32, No. 6, 472-475 (2004)
DOI: 10.1080/14034940410029432
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