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Consent Forms

The Populations/ELSI Group (http://www.genome.gov/10001685), a group of geneticists and experts in the ethical, legal, and social implications of genetics research, which made recommendations for the Project during the initial planning phase, developed an informed consent form template. This template was modified by the researchers who collected the samples in Nigeria, Japan, and China, to make the consent form used in each location culturally appropriate. The modified consent forms were then translated into Yoruba, Japanese, and Chinese, and approved by the relevant local ethics committees. The template was also modified so that it could be used to obtain reconsent from the Utah donors of the existing CEPH samples; the local ethics committee approved the CEPH reconsent form. Additional culturally appropriate written explanatory materials were provided to prospective donors at some sites.


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