Academic journal article Journal of Cultural Diversity

Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices

Academic journal article Journal of Cultural Diversity

Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices

Article excerpt

Abstract: The lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases. Objectives: The purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions. Methods: Eight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method. Results: Themes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research. Conclusions: Community-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.

Key Words: Genomics Research, Native Americans, African Americans, Decisions to Participate, Fragile X Research

It is typical for representation of Native-Americans and African-Americans in genomics-related studies to be significantly less than that of Caucasians (Hipps, Roberts, Farrer, Green et al., 2003; Kessler et al., 2005; McQuillan et al., 2006; Moorman et al., 2004; Myers et al., 2000; Olopade et al., 2003; Shavers, Lynch, «& Burmeister, 2000). For instance, in a study regarding the likelihood of undergoing genetic testing for cancer risk (n=622), only 1 . 1 % of the participants were NativeAmerican, and a mere 0.3% were of African- American ancestry(Bosompra et al., 2000). A study of parents' attitudes regarding testing for Fragile X Syndrome (FXS) consisted of 416 (94%) respondents who were reported as being non-Hispanic white / Caucasian and only eight participants were African-American (Skinner, Sparkman, & Bailey, 2003).

The persistent under-representation of minorities limits overall advances in genomic research so that interpretation of novel findings within minority populations must be interpreted cautiously. Genomic studies are typically based on very small sample sizes with participation of Native Americans and African- Americans significantly less than that of Caucasians (Hipps et al, 2003; Kessler et al., 2005; Moorman et al., 2004; Myers et al., 2000; Olopade et al., 2003). In particular, these specific populations remain under-represented in the emerging discoveries of genes associated with specific disorders (Furr, 2002; Hipps et al.; Lipkus et al., 1999). This under-representation is troubling because Native- Americans and African- Americans have some of the highest rates of overall morbidity and mortality related to diseases with a genetic link (Shavers et al., 2000).

Additionally, a growing number of genetic tests, including carrier identification, predictive testing for inherited risks for diseases, and pharmacogenetic testing for the variations in response to drugs (CDC, 2005) are being used for population-based applications. According to the Centers for Disease Control (CDC, 2005), there is evidence that indicates race and ethnicity are associated with the continual increase of health disparities within the U.S. population.

A greater comprehension of the factors mediating participation of Native- Americans and AfricanAmericans in genetic research is crucial but scarce. An increased interest in participation in genetic research may be linked to beliefs that results will benefit the community and its health (Christopher, 2005; Matsunaga et al, 1996; Nichter, 1984).

According to researchers Native -Americans' and African-Americans' participation in research suggest that participatory models be employed (Christopher, 2005; Moreno-John, Gachie, Fleming, Napoles-Springer et al. …

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