Hmong participants’ reactions to return of individual and community pharmacogenetic research results: “A positive light for our community”

K. Holzer, K. A. Culhane-Pera, R. J. Straka, Y. F. Wen, M. Lo, K. Lee, T. Xiong, K. Peng, J. Bishop, B. Thyagarajan, H. A. Zierhut

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
Pages (from-to)53-65
Number of pages13
JournalJournal of Community Genetics
Volume12
Issue number1
DOIs
StatePublished - Jan 2021

Bibliographical note

Funding Information:
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.

Keywords

  • Community-based participatory research
  • Genetic testing
  • Hmong
  • Pharmacogenetics
  • Precision medicine research

PubMed: MeSH publication types

  • Journal Article

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