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発表内容

Title:
Ethical issues on research with stored human samples

Kenji Matsui, MD, PhD
Head, Office for Research Ethics,
Department of Preventive Medicine and Epidemiologic Informatics,
The National Cerebral and Cardiovascular Center of Japan

Abstract:
Stored human materials including biological samples and health-related information have great values as a resource for basic, epidemiological, and translational biomedical research. Also, with recent remarkable development of genetics and informatics, such materials are thought to hold immense potential for the subsequent realization of personalized medicine as well as the development of health-care industry. There is enthusiasm therefore all over the world to collect human materials from large populations. On the other hand, research on stored human materials raises various and unique ethical issues, such as, moral status of human body parts/samples; consent/re-consent; individual feedback/disclosure of analysis results, incidental findings, the right to know/ the right not to know; secondary use; privacy/confidentiality; stigma/discrimination; ownership of body parts, etc. The aim of this talk is to let participants get, firstly, overviews on moral status of human body parts/samples, and secondarily, a feel for ethical dilemma on consent that pertains to research using stored human materials.

References:
1. Elisa Eiseman, Susanne Haga. Handbook of Human Tissue Sources: A National Resource of Human Tissue Samples. RAND Corp, 1999.

2. Robert F. Weir, Robert S. Olick, Jeffrey C. Murray. The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era of Genomic Medicine. Oxford University Press, 2004.

3. Robert F. Weir. Stored Tissue Samples: Ethical, Legal, and Public Policy Implications. University of Iowa Press, 1998.

4. Bernice Elger. Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics? Ashgate Publishing Ltd., 2010.

5. David Koepsell. Who Owns You? The Corporate Gold Rush to Patent Your Genes. Wiley-Blackwell, 2009.

6. David Wendler. Research With Biological Samples. In: The Oxford Textbook of Clinical Research Ethics. Emanuel EJ, et al. (editors) Oxford University Press, 2008.