Policy on Community Engagement or Community Consultation

Genetic research can have implications not only for the individuals who donate samples for the research, but also for the broader communities and populations of which they are a part. This is especially so where the research involves the potential for comparing allele frequencies among groups with different geographic ancestries, in a context where societal, racial or ethnic discrimination already exists.

For example, if a genetic variant found to be associated with a particular disease or characteristic were found to be more frequent in a group from a particular geographical location, and if this information were over-generalized to all or most members of that group or to related groups, entire groups could be stigmatized. Harm can also occur when reports of the findings of genetic association studies are not placed in context to make it clear that there may be significant non-genetic contributions to the characteristic or trait in question. Finally, an over emphasis on group allele frequency differences can (at least in some societies) create the misleading impression that there are precise genetic boundaries between groups of people thus reinforcing racial or ethnic biases.

For this reason, it is frequently appropriate to conduct some form of community engagement or community consultation when genetic research - especially genetic variation research involving members of identified populations - is proposed. Investigators who wish to submit samples to the NHGRI Sample Repository for Human Genetic Research should thus consult with the NHGRI Project Officer prior to collecting the samples to discuss NHGRI's interest in such a collection, whether such community engagement or consultation is appropriate in the specific context in which the proposed collection would take place, and the range of possible methodologies. Final decisions regarding the appropriateness and form of consultation or engagement will be made jointly by the investigator and the NHGRI, in consultation with experts in the ethical, legal, and social implications (ELSI) of human genetic research. The appropriateness of establishing a Community Advisory Group (CAG) or other body to serve as a liaison between the donor community and the Repository, and the role such a group might play, will also be considered on a case by case basis.