Rohlman Diana, Frey Greta, Kile Molly L, Harper Barbara, Harris Stuart, Motorykin Oleksii, Simonich Staci L Massey, Harding Anna K
Environ Justice. 2016 Jun 1;9(3):85-92. doi: 10.1089/env.2016.0006.
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 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, in which nine Tribal members consumed 50 g 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 CBPR 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.
基于社区的参与性研究(CBPR)的一个期望是让参与者能够获取研究结果。然而,在缺乏临床相关性的情况下报告涉及生物测量的研究产生的实验数据,对科学家和参与者来说可能具有挑战性。我们应用数据共享的最佳实践来报告一项研究的结果,该研究旨在探索乌马蒂拉印第安保留地联盟部落(CTUIR)成员食用传统烟熏三文鱼后多环芳烃的吸收、代谢和排泄情况。开展了一项饮食暴露研究,九名部落成员食用了50克传统烟熏三文鱼,并在24小时内多次提供尿液样本。在招募过程中,参与者要求在分析后获取他们的数据。数据披露是CBPR的一个重要元素,必须以与数据分析相同的严谨态度来对待。数据披露领域相对较新,但如果处理得当,可以改善社区内的教育、减少不信任并提高环境健康素养。利用这项研究的结果,我们提出了与部落社区共享数据的机制。