NIAGADS permits research involving analysis of genomic data to derive genetic ancestry groups under the following conditions:
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the proposed research is consistent with the investigator's institutional IRB determination (or other applicable institutional review),
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complies with the data use limitations applicable to the requested dataset, and
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genetic ancestry groups will not be used to identify individuals or assign geographic, ethnic, or other nongenetic labels that may be stigmatizing to the participants.
If your proposed research includes analyses involving genetic ancestry, this should be clearly described in the Research Use Statement submitted as part of your Data Access Request (DAR). Providing sufficient detail helps the Data Access Committee (DAC) evaluate the proposed use of the data and assess any data safety considerations.
When genetic ancestry analyses are proposed, investigators should describe:
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the genetic ancestry factors that will be examined and how they will be used in the analysis;
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whether genetic ancestry factors will be assigned to individual participants and, if so, the methods used to assign them;
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how genetic ancestry will be characterized and reported in research outputs; and
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whether genetic ancestry groups will be used to characterize genetic ancestry and, if so, what those variables are and how they will be derived.
The research activities described in the Research Use Statement should be consistent with the IRB documentation submitted with the DAR. If the proposed research includes analyses of genetic ancestry that are not reflected in the submitted IRB documentation, NIAGADS may request updated IRB documentation or other institutional review materials before completing its review.