Genomic Discretion

Community-based participatory research feedback is crucial in the project design stage of population based sequencing experiments. Managing research expectations of an Indigenous community and understanding/conveying research limitations is of utmost importance when engaging Indigenous populations in genomic research. By letting the community of people you are trying to engage influence the project design phase i.e. valuing Indigenous knowledge, we can 1.) Avoid paternalistic interactions, and 2.) Tailor surveys of human genetic variation to accommodate the needs of the community e.g. If Navajo community members don't want you to challenge their origin story using information derived from genome sequencing experiments do not sequence their mitochondrial (maternity) or Y chromosome (paternity) DNA.

 

Targeted capture, e.g. exome sequencing vs. whole genome sequencing is an effective way to generate sequence data prioritized on the expectations of the research community you are engaging. Another example would be targeted capture of the top 100 T2D/Obesity/metabolic disease trait genes in a population that has a higher susceptibility to T2D. The distinction between capturing only those top 100 genes and returning results for those top 100 genes while stockpiling the remainder of those individuals’ genomes is a true attempt at “genomic discretion" in project design. By taking these precautions in the design phase of population based genomic screens we have the potential to 1.) If successful -- build trust within the community and 2.) re-caste/re-imagine the relationship between Indigenous people and Western science.

 

"Technology is not some magic elixir that can be used to solve all of Indigenous peoples problems. However viewing technology through an Indigenous lens is a powerful idea"

-Riley Taitingfong (Chamorro, Ph.D. Candidate, Communications, University of California, San Diego)