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https://ir.library.oregonstate.edu/concern/articles/j6731827b

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  • One expectation of community-based participatory research (CBPR) is participant access to study results. However, reporting experimental data produced by studies involving biological measurements in the absence of clinical relevance can be challenging to scientists and participants. We applied best practices in data sharing to report the results of a study designed to explore polycyclic aromatic hydrocarbons (PAHs) absorption, metabolism, and excretion following consumption of traditionally-smoked salmon by members of the Confederated Tribes of the Umatilla Indian Reservation (CTUIR). A dietary exposure study was developed, wherein 9 Tribal members consumed 50 grams of traditionally-smoked salmon and provided repeated urine samples over 24 hours. During recruitment, participants requested access to their data following analysis. Disclosing data is an important element of community-based participatory research, and must be treated with the same rigor as that given to the data analysis. The field of data disclosure is relatively new, but when handled correctly can improve education within the community, reduce distrust and enhance environmental health literacy. Using the results from this study, we suggest mechanisms for sharing data with a Tribal community.
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