Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research

Abstract

Historically, Hmong refugees in the USA were distrustful of Western medicine, medicines, and medical research due to concerns about harm and experimentation. Current Hmong concerns about genomics research are not well known. Our research aims were to identify cultural and ethical issues about conducting genomic studies in the Hmong community. Using a community-based participatory action process, the West Side Hmong Genomics Research Board conducted a qualitative exploratory research study that included semistructured interviews with five Hmong key informants and five focus groups with 42 Hmong adults near Saint Paul, Minnesota. We used a thematic analysis approach to qualitatively analyze the data. Identified concepts of heredity included characteristics that are passed between the generations: physical features; character traits; some behaviors; some diseases; and probably not response to medicines, although individual variations to medicines are known. Most participants were willing to join genomic research projects to help themselves and community. Others refused to participate: they did not want to know future disease risk; did not want doctors to know their genes; did not trust doctors with their blood; and did not know if they would benefit from results. Ethically, many participants were in favor of confidentiality, but wanted to know their personal results; many were willing to agree to genetic storage of anonymous samples; all agreed with individual consent, not family or community consent; and none were concerned about social stigma from genetic testing about chronic diseases and medications. The Hmong Genomics Board will build upon these concepts to create, conduct, and evaluate culturally-appropriate genomic and pharmacogenomic research projects relevant to community interests.

Time, trust, and transparency: Lessons learned from collecting blood biospecimens for cancer research from the Asian American community

“…Like other studies, we discovered that, although Asian Americans had low levels of awareness and knowledge regarding biospecimen donation and biobanking, interventions that increased knowledge of and fostered more favorable attitudes toward biospecimen donation resulted in a greater willingness to donate . Common barriers to donation include: cultural beliefs about biospecimens, such as the belief that there is a finite amount of blood in the body and, once that blood leaves the body, it will not be replenished; not being asked to donate; and distrust of research . Common facilitators to donating include altruism and wanting to benefit future generations .…”

“…However, although both of those studies focused on engaging the general community and required participants to attend an in‐depth (45‐60 minutes) biospecimen educational seminar before donating, our approach included engaging both patients with cancer and the general community and did not require participants to attend an in‐depth educational session on biospecimens. Our study provides evidence that in‐depth education may not be required for communities to donate biospecimens for cancer research, and it also suggest that simply not being asked to donate is a significant barrier to donating …”

“…Common barriers to donation include: cultural beliefs about biospecimens, such as the belief that there is a finite amount of blood in the body and, once that blood leaves the body, it will not be replenished; not being asked to donate; and distrust of research . Common facilitators to donating include altruism and wanting to benefit future generations . However, although we identified common factors that influence Asian American's decision to donate biospecimens, we also observed ethnic specific differences.…”

Participatory Genomic Testing Can Effectively Disseminate Cardiovascular Pharmacogenomics Concepts within Federally Qualified Health Centers: A Feasibility Study

“…Others have recognized the importance of fostering a community-based approach to genomic research and education. 19,20 Collab-Teaching Pharmacogenomics Concepts -Johnson et al orative research relationships with underserved populations should be a fundamental tenet in future genomics research. Concerns about the potential for the scientific community to misuse genetic information has historically been a barrier for many African Americans to participate in genetic research.…”

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

“…When Hmong people first arrived in Minnesota in the 1970-1990s, many did not trust medical providers or researchers and were concerned about providing blood and tissue samples as well as participating in general research and experimentation (Culhane-Pera et al 2003). Over the past four decades, Hmong communities around the world have participated in few genomic-based research projects; their specific responses to genomic-based research are not well known (Xiong and Pepperell 2013).…”