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A Community Advisory Group (CAG) was established at each site where new samples were collected. Each CAG will serve as liaison between the non-profit Coriell Institute for Medical Research, where the samples are being stored as cell lines, and the donor community. The Coriell Institute will keep the CAGs informed about the general progress of the HapMap Project, how the HapMap is being used, and how the stored samples are being used. This will be done through periodic newsletters (translated into the languages of all the donor communities) and through quarterly reports from the Coriell Institute to the CAGs. The CAGs will make suggestions about ways to improve communication about the Project and the samples and will let the Coriell Institute know about any concerns about future uses of the samples that may arise.
The informed consent form that all sample donors signed explained that the samples they contributed would be used not only for the HapMap Project, but also for other, future studies. Such future studies, by building on the HapMap data, will enhance the usefulness of the HapMap itself. However, because not all types of studies that may be done with the samples can currently be foreseen, it is possible that some future studies may raise special concerns in some communities. The Coriell Institute will work with the CAGs to resolve any such concerns should they arise. In the unlikely event that a community's samples were used in a way different from what was agreed to, a CAG could ask that all of the samples from that community be withdrawn from further distribution, and the Coriell Institute would comply with that request.
Each individual CAG establishes its own procedures and decides its own membership and leadership structure, consistent with local cultural norms. Some CAGs have, or are setting up, their own websites :
To help facilitate the communication of information about the Project, about future uses of the samples, and about genetic variation research and its societal implications more generally, to the broader community
In addition to distributing the newsletters and quarterly reports, the Coriell Institute will provide up to 1,000 dollars per year to defray costs associated with the CAGs for those CAGs that request such support. The Coriell Institute will support the CAGs for as long as they wish to continue.
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