Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach

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 pharmacogenomicbased 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.

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

“…Concerns about participation, reasons not to test or receive results from testing, and factors that presented barriers to participation in research were assessed by 18 publications (Akinleye et al, 2011;Buseh et al, 2014Buseh et al, , 2012Culhane-Pera et al, 2017;Frazier et al, 2006;Freedman et al, 2013;Halbert et al, 2006Halbert et al, , 2016Hooper et al, 2013;Hull et al, 2008;Jenkins et al, 2011;Kinney et al, 2006;Lakes et al, 2013;Murphy & Thompson, 2009;Pettey et al, 2015;Rew et al, 2010;Sanderson et al, 2017;Simon et al, 2017). The most commonly cited reasons not to participate in genetic testing or research included privacy and confidentiality concerns (n = 7; Buseh et al, 2012;Halbert et al, 2016;Hull et al, 2008 Sanderson et al, 2017;Simon et al, 2017), use of participants' genetic information for other research purposes that were not consented for or were undesirable (n = 7; Buseh et al, 2012;Halbert et al, 2006Halbert et al, , 2016Hull et al, 2008;Jenkins et al, 2011;Pettey et al, 2015;Sanderson et al, 2017), concerns about insurance or employment discrimination (n = 5; Akinleye et al, 2011;Buseh et al, 2014Buseh et al, , 2012Frazier et al, 2006;Pettey et al, 2015), concerns about risks or harms of the study proc...…”

“…Ten studies included Asian Americans in their study populations (Aagaard-Tillery et al, 2006;Bloss et al, 2018;Culhane-Pera et al, 2017;Hull et al, 2008;Jazwinski et al, 2013;Lakes et al, 2013;Rew et al, 2010;Sanderson et al, 2017;Sheppard et al, 2018;Simon et al, 2017). High consent rates among Asian American participants were reported by Culhane-Pera et al, and no American participants were less likely than other groups to indicate interest in a precision medicine research study.…”

“…biospecimen collection for research(n = 8;Aagaard-Tillery et al, 2006;Cox et al, 2007;Culhane-Pera et al, 2017;Hensley Alford et al, 2011;Jazwinski et al, 2013;Kinney et al, 2006;Nodora et al, 2016;Sheppard et al, 2018), and there were no substantial differences between the two types of studies. Approximately half of the research scenarios in which these high consent rates were found involved consent for unrestricted access to participants' samples and health information for future use by other researchers(Aagaard- Tillery et al, 2006;Cox et al, 2007;Culhane-Pera et al, 2017;Nodora et al, 2016;Pettey et al, 2015;Sanderson et al, 2017;Sheppard et al, 2018).…”

Potential Clinical Relevance of Differences in Allele Frequencies Found within Very Important Pharmacogenes between Hmong and East Asian Populations

“…Success in recruiting Hmong adults for our work came about by engaging community members in the HGCAB and partnering with community members in CBPAR processes. Described in greater detail elsewhere, our partnership between Hmong and non‐Hmong researchers, clinicians, and community members allowed us to build upon our understanding of the community's perceptions about genetics and clinical research in order to address the community's hesitancy to participate in the research process, their desires for utility and translational value of testing performed, and logistical issues of language, time, and access.…”

“…Findings from our return of results (Phase 2) will be reported separately . Throughout, we used CBPAR methodologies to engage Hmong in this research partnership . The CBPAR team included Hmong and non‐Hmong academic researchers, community clinicians, community researchers, pharmacy students, and graduate students.…”