Literature DB >> 32761465

Hmong participants' reactions to return of individual and community pharmacogenetic research results: "A positive light for our community".

K Holzer1, K A Culhane-Pera1, R J Straka2, Y F Wen2, M Lo1, K Lee1, T Xiong2, K Peng2, J Bishop2, B Thyagarajan3, H A Zierhut4.   

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.

Entities:  

Keywords:  Community-based participatory research; Genetic testing; Hmong; Pharmacogenetics; Precision medicine research

Year:  2020        PMID: 32761465     DOI: 10.1007/s12687-020-00475-3

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  7 in total

1.  Hmong health beliefs and experiences in the western health care system.

Authors:  Sharon K Johnson
Journal:  J Transcult Nurs       Date:  2002-04       Impact factor: 1.959

Review 2.  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

Authors:  Sheba George; Nelida Duran; Keith Norris
Journal:  Am J Public Health       Date:  2013-12-12       Impact factor: 9.308

3.  Community dissemination and genetic research: moving beyond results reporting.

Authors:  Susan Brown Trinidad; Evette J Ludman; Scarlett Hopkins; Rosalina D James; Theresa J Hoeft; Annie Kinegak; Henry Lupie; Ralph Kinegak; Bert B Boyer; Wylie Burke
Journal:  Am J Med Genet A       Date:  2015-04-21       Impact factor: 2.802

4.  Improving health through community-based participatory action research. Giving immigrants and refugees a voice.

Authors:  Kathleen A Culhane-Pera; Michele Allen; Shannon L Pergament; Kathleen Call; Amira Adawe; Rosaura de la Torre; Mikow Hang; Fatima Jama; Maria Navas; Luis Ortega; Pachia Vue; Thomas Tou Yang
Journal:  Minn Med       Date:  2010-04

5.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

6.  African Americans' views on research and the Tuskegee Syphilis Study.

Authors:  V S Freimuth; S C Quinn; S B Thomas; G Cole; E Zook; T Duncan
Journal:  Soc Sci Med       Date:  2001-03       Impact factor: 4.634

7.  Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study.

Authors:  Juli Murphy Bollinger; Joan Scott; Rachel Dvoskin; David Kaufman
Journal:  Genet Med       Date:  2012-03-08       Impact factor: 8.822

  7 in total
  5 in total

1.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

Review 2.  Moving Pharmacogenetics Into Practice: It's All About the Evidence!

Authors:  Jasmine A Luzum; Natasha Petry; Annette K Taylor; Sara L Van Driest; Henry M Dunnenberger; Larisa H Cavallari
Journal:  Clin Pharmacol Ther       Date:  2021-07-07       Impact factor: 6.903

Review 3.  Pharmacogenomic Clinical Decision Support: A Review, How-to Guide, and Future Vision.

Authors:  Dyson T Wake; D Max Smith; Sadaf Kazi; Henry M Dunnenberger
Journal:  Clin Pharmacol Ther       Date:  2021-08-29       Impact factor: 6.903

4.  The Identification of Novel CYP2D6 Variants in US Hmong: Results From Genome Sequencing and Clinical Genotyping.

Authors:  Ya Feng Wen; Andrea Gaedigk; Erin C Boone; Wendy Y Wang; Robert J Straka
Journal:  Front Pharmacol       Date:  2022-03-21       Impact factor: 5.810

5.  Assessing Vietnamese American patient perspectives on population genetic testing in primary care: A community-engaged approach.

Authors:  Amy A Lemke; Sarah H Choi; Vinh Dang; Tommy Q Dang; Joon-Ho Yu
Journal:  HGG Adv       Date:  2022-08-06
  5 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.