1Anthropology, University of Oklahoma, 2Centro Nacional de Salud Intercultural, Instituto Nacional de Salud, Lima-Perú.
Thursday 9:15-9:30, Galleria North
Peruvian indigenous communities represent an attractive target for genomic research. From local Peruvian researchers to large international efforts, research teams endeavor to fill the gap in existing genetic data from studying this part of the world. However, genetic studies of Peruvian natives raise many questions about the appropriateness of this type of research. Peru, like many developing countries, is still in the early process of defining mechanisms for the protection of vulnerable communities.
It has been argued that genetic research in native communities is unethical and exploitative because it is led by questions that are relevant to the researchers and mostly irrelevant or even upsetting for the communities, in addition to producing benefits for the researchers and rarely for the groups studied. Yet, excluding native communities in genomic research will generate a larger health disparity if genetic data provides applications to improve human lives.
We present our experience engaging native Peruvian communities in genomic research, including the challenges we faced and the opportunities we discovered. We propose that elements of community based participatory research, from the initial consultation to the final review of manuscripts, will enable sensible research that incorporates the community priorities and concerns. Although there might be unclear normative framework that regulates research with native communities, both past and present, in developing countries, research can support local authority’s efforts to develop this framework, which was our case when working with Instituto Nacional de Salud in Peru.
This research is in part supported by grants from the U.S. National Institutes of Health (R01 HG005172-01 and R01 GM089886-01A1) and the National Science Foundation (#0845314).