Revolution in Informed Consent: The Rad Genomics Project

Yoshifumi Matsui, Mayumi Iwakawa, Chisa Oh-hira, Ryonfa Lee, Yoshinobu Harada and Takashi Imai

National Institute of Radiological Sciences, Rad Genomics Project, Frontier Research Center

The completion of the sequencing of the human genome has provided us with a powerful tool for unlocking the secrets of our genetic heritage. The Frontier Research Center, of the National Institute of Radiological Sciences, has recently launched the Rad Genomics Project, the aim of which is individualized radiotherapy based on genetic factors. The protocol and informed consent guidelines of this project were submitted to a specially appointed ethical review committee in the National Institute of Radiological Sciences. One of the most important issues is the proper balance between privacy concerns and fair use of genetic information. Growth in the number of genetic tests available and the frequency with which they are used raises the possibility of discrimination due to inappropriate access to, and use of, private genetic information. In this paper, we discuss the key issues and problems concerning informed consent. The topics covered include the dignity of human subjects, freedom to perform genetic studies, advantages and disadvantages for subjects, disclosure of results of genetic analysis, and intellectual property.

Key words
informed consent, genetic reseach, bioethics

Reprint requests
Yoshifumi Matsui Frontier Research Center, National Institute of Radiological Sciences, Rad Ganomics Projent 4-9-1 Anagawa Inage-ku, Chiba, 263-8555 JAPAN

Accepted
October 31, 2001

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