Genetic Research with Hmong-ancestry Populations: Lessons from the Literature and a Pilot Study

AbstractGenetic research with Hmong-ancestry populations has examined differentiation among other Southeast Asian groups and select health conditions; however, there have been few discussions of specific methodological approaches in the literature. Studies within ethnically diverse communities must conduct culturally competent research in order to avoid stigmatization and harm to the communities. We present recommendations for conducting culturally competent genetic research with Hmong-ancestry populations through insights from interviews and observations from a pilot study examining a potential genetic basis of susceptibility to a fungal infection within a Hmong community. Implications for future genetic-based health research and public health are discussed.Keywords: Hmong, genetics-based health researchIntroductionAt the 2010 American Society of Human Genetics annual meeting, Dr. Roderick McInnes delivered the presidential address on the "silent language" of culture that geneticists must learn. Dr. McInnes highlighted several cases of genetic research with indigenous populations that have led to controversy, as well as research that has been successful. Through personal observations and correspondence, Dr. McInnes called for culturally competent research and presented three principles central to genetic research with developing communities: (1) while respecting the culture of the community, do not violate basic principles of ethics, including institutional review board rules and the use of bribery; (2) realize the existence of many local cultures within one seemingly homogenous group, and act respectively; and (3) make a longterm commitment as one may need and want to return on multiple occasions to build trust with the community (McInnes, 2011). Additionally, culturally competent research must respect the community's desire for self-determination, desire to benefit from the research, and any request to retain intellectual property rights and ownership of biological samples collected.A lack of culturally competent study designs may limit future genetic research with culturally diverse populations. A challenge already present is low participation in research from individuals in these populations, which is problematic from both a scientific and social justice standpoint (Bowen and Penchaszadeh, 2008). From a scientific viewpoint, there are missed opportunities to explore specific ethnic differences in disease patterns, to identify differential risks among ethnic populations, and to recognize genetic contributions to health disparities. In terms of social justice, unequal research participation may lead to unequal benefits from this research, and possibly an increase in health disparities. Reasons for low participation from culturally diverse populations include limited knowledge of genetics and genetic testing, and poor access to available educational information and other resources (Catz et al., 2005). Hmong-Americans are an example of a culturally diverse population that has had a history of challenges with the health care system and with health related research. A hill-tribe minority group originally from the border regions of China, Vietnam, Laos, and Thailand (Lee, 2007), the Hmong now reside in countries all over the world. In 2010, the Hmong population in the United States was estimated to be over 260,000, an increase of 175% since 1990 (Pfeifer et al., 2012). California, Minnesota, and Wisconsin are home to the three largest Hmong populations, respectively.Hmong-ancestry communities face several health challenges including diabetes, cardiovascular disease, cancer, tuberculosis, hepatitis B, and depression, resulting in notable health outcomes and care disparities (Pinzon-Perez, 2006). Several factors contribute to these disparities including low literacy, high rates of poverty, and cultural barriers. More recently, studies have begun to examine a possible genetic basis of health conditions in this community. …