Informed Consent to Future Research on Stored Tissue Samples: the Views of Researchers, Ethics Review Committee Members and Policy Makers in Five Non-Western Countries

• Published in: Asian bioethics review 2009-12, Vol.1 (4), p.401-416
• Main Authors: Matsui, Kenji, Zeid, Alaa Abou, Zhang, Xinqing, Krohmal, Benjamin, Muthuswamy, Vasantha, Koo, Young Mo, Wendler, David, Chao, Jesse, Kita, Yoshikuni, Lie, Reidar
• Format: Article
• Language: English
• ISSN: 1793-8759; 1793-9453

Collections of large repositories of human tissue have become increasingly important for biomedical research. There are numerous studies of the attitudes of prospective research participants to issues of informed consent for future use of stored tissue samples. In contrast, there has not been a systematic study of the attitudes of researchers and others involved in the research with regard to this same issue. This is a multi-country survey in non-Western countries of attitudes and beliefs among researchers, ethics committee members, and people involved in policy making for research regarding several key ethical and policy issues on informed consent and ethics review in research on stored human biological samples. The opinions of our respondents were evenly divided between two options for informed consent for future research. Half of them favored requiring potential donors of tissue samples to choose between two options of either refusing all unspecified future research on their samples, or allowing any future research on their samples. The other half wanted tissue donors to be able to choose between requiring researchers to adhere to specific conditions for future research on their samples. Previous studies of attitudes of tissue donors have demonstrated more support for a binary option. Possible reasons for this apparent difference between tissue donors on the one hand and researchers and ethics review committee members on the other hand are discussed.