Abstract
Advancing precision medicine relies in part on examining populations that may exhibit unique genetic variants that impact clinical outcomes. Failure to include diverse populations in genomic-based research represents a health disparity. We implemented a community-based participatory research (CBPR) process with the Hmong community in Minnesota, who were refugees from Laos, in order to assess the feasibility of conducting genomic and pharmacogenomic-based research for genetic variants that are relevant to the Hmong community. Our Hmong Genomics Board, consisting of Hmong and non-Hmong professionals, used CBPR principles and built on previous formative research to create and implement culturally and linguistically appropriate informed consent processes for Hmong people at six community venues. The Board chose genetic variants for diabetes risk and warfarin response as relevant to the community. The Institutional Review Board approved aggregate but not individual return of results. Two hundred thirty-seven Hmong participants with mean (range) age of 30.2 (18–81) years and diverse levels of education (22% without and 75% with high-school education) provided saliva for genetic (DNA) analyses. Eighty-five percent of participants agreed to store DNA for future analyses, 82% agreed to share DNA with other researchers, and 78% agreed to be contacted for future studies. Twenty-five elders refused to participate because they wanted individual results. Aggregate results were shared with all participants. This CBPR approach proved highly successful to obtain informed consent and recruit a sample from the Hmong community for a genomic and pharmacogenomic study. Investment in the CBPR process may prove successful to address the gap of genomic information in under-represented communities.
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Acknowledgements
We acknowledge University of Minnesota’s Program in Health Disparity Research for funding 2008–2009 (Grant# PHDR-2008-005), and Genetic Alliance funds for our educational materials through Does it Run in the Family? Toolkit. And we gratefully acknowledge additional members of the West Side Genomics Board including See Moua, Tzur Thong Moua, Tzianeng Vang, and Chau Vue, and 6 college students who helped the Board: Caroline Lochungvu, Kajua Lor, Pangdra Vang, Tou Lee Xiong, Pa Kou Yang, and Yang Yang.
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This study was funded by University of Minnesota’s Program in Health Disparity Research for funding 2008–2009 (Grant#PHDR-2008-005).
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Minnesota institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was approved by the University of Minnesota Committee on the Use of Human Subjects in Research, 0110M52021.
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Informed consent was obtained from all individual participants included in the study.
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K. C.-P. and R. S. contributed equally to this work.
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Culhane-Pera, K.A., Straka, R.J., Moua, M. et al. Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach. J Community Genet 8, 117–125 (2017). https://doi.org/10.1007/s12687-017-0292-x
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DOI: https://doi.org/10.1007/s12687-017-0292-x