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Pharmacogenetic research has historically lacked racial and ethnic diversity, limiting the application of findings to minority populations. Recent studies, including the Hmong, have gauged communities’ interest in participating in genomic research and receiving their individual results. This study was conducted to create a culturally and linguistically appropriate format to return pharmacogenomic results and identify Minnesota Hmong research participants’ reactions to their personal and collective results. Using a community-based participatory research approach, researchers collaborated with Hmong community members to format the pharmacogenetic disclosure process. Three focus groups were completed with 24 Hmong participants and three major themes emerged using thematic analysis. Many Hmong focus group participants viewed the results positively, finding them useful for themselves and their community as a means to optimize responses to and avoid harms from medicines. However, some participants expressed concerns about harms that the pharmacogenetic information could bring, including anxiety, misunderstanding, discrimination, exploitation, and lack of a clinician involvement in interpreting and applying the result. Many participants interpreted their results through an experiential lens, trusting their experience of medicines more than trusting genetic information, and through a cultural lens, expressing the belief that environmental factors may influence how people’s bodies respond to medicines by influencing their inherited flesh and blood (roj ntsha). Lastly, participants stressed the importance of disseminating the information while acknowledging the complex linguistic, educational, and cultural factors that limit understanding of the results. Researchers, genetic counselors, pharmacists, and healthcare providers should strive to return results in meaningful ways to all members of society.

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This study was completed in fulfillment of the requirements for the first author’s Masters of Science degree from the University of Minnesota. Thank you to all the other members of the interdisciplinary research team and the University of Minnesota Molecular Diagnostics Laboratory, and to the members of the Hmong Genomics Community Advisory Board (HGCAB) as well as the focus group participants. We appreciate the work of Song Xiong for her visual conceptualization of the results and community advisory board members for their input.

Funding was from the Grand Challenge Exploratory Research Award, Office of the Executive Vice President and Provost, University of Minnesota.

Affiliations

1. Department of Genetics Cell Biology, & Genetics, University of Minnesota-Twin Cities, 6-160 Jackson Hall, 320 Church Street SE, MN, 55455, Minneapolis, USA

   K. Holzer, K. A. Culhane-Pera, M. Lo, K. Lee & H. A. Zierhut

2. Experimental and Clinical Pharmacology Department, College of Pharmacy, University of Minnesota-Twin Cities, Minneapolis, MN, USA

   R. J. Straka, Y. F. Wen, T. Xiong, K. Peng & J. Bishop

3. Department of Laboratory Medicine and Pathology, University of Minnesota-Twin Cities, MN, Minneapolis, USA

   B. Thyagarajan

Contributions

Authors KH, KACP, RJS, HAZ, JB, YFW, KP, TX, KL and BT contributed to the study design, data collection, data analysis, manuscript creation, and review. ML contributed to the study design, data analysis, manuscript creation, and review.

Corresponding author

Correspondence to H. A. Zierhut.

Statement of ethics

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study. Study was approved by the Human Research Protection Program, University of Minnesota Institutional Review Board (IRB #1702M06041). No animal experiments were completed.

Conflict of interest

All authors declare no conflicts of interest specifically related to content in this manuscript. The following unrelated relationships are disclosed for transparency. Heather Zierhut is a Senior Advisor, Chair of the Board of Directors for GeneMatters, LLC (telegenetics genetic counseling company) and a member of the Board of Directors of the National Society of Genetic Counselors.

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