Laying the Foundation in Genetic Medicine: Understanding Why African Americans and Hispanic/Latinos are Underrepresented in Genetic Testing and in Genetic Research.
Sutton, Karey Michelle
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Genetic medicine is a field progressing at a rapid rate. Even with all the new advancements, there are still minority groups who are less visible when it comes to the uptake of some forms of genetic medicine. African Americans and Hispanic/Latinos have been shown to experience certain conditions more than Caucasians. In the 2008 African American profile for North Carolina, African Americans had higher age-adjusted mortality rates for heart disease, cancer, stroke, diabetes, kidney disease, and chronic liver disease (North Carolina State Center for Health Statistics, 2010). Hispanics/Latinos in North Carolina had higher incidence levels of cancer, HIV and kidney disease as opposed to other races (North Carolina State Center for Health Statistics (b), 2010). Despite these poor health outcomes, African Americans and Hispanic/Latinos are less visible when it comes to participating in medical genetics research opportunities and also in genetic testing (Shavers, Lynch, & Burmeister, 2002). Lack of participation among African-American individuals can attributed to mistrust, due to past misuse in clinical research settings such as the Tuskegee Syphilis Study and a variety of other factors (i.e. access to care, socioeconomic level) (Smith, Thomas, Williams, & Ayers, 1999). Among Hispanic/Latinos, concerns exist about immigration and governmental bias, as well as language barriers and cultural differences between the researcher and participant (Gelman, 2010). These cultural histories have become particularly salient as the field of genomics becomes increasingly reliant on initiatives to increase minority participation in research efforts. In order to explore beyond what previous quantitative studies have found, ethnographic research methods such as focus groups and semi-structured interviews were utilized to understand why members of these two heritage groups are underrepresented. The initial phase of my study was completing two separate focus groups, one with only African Americans and one with only Hispanic/Latinos. The information shared in the focus groups sessions revealed potential areas of exploration for the individual semi-structured interviews. Thus, I conducted 65 semi-structured interviews with African American individuals and 25 semi-structured interviews the other with only Hispanic/Latino individuals. The analysis of the interviews revealed that factors such as age, religion, education level, and finances play key roles in decisions about participating in genetic testing or genetic research. Understanding the views and concerns of African Americans and Hispanic/Latinos could not only help identify potential barriers to genomics research and testing, but could also provide effective means of overcoming them. As an outcome of my study I argued for the need for community input in setting the research agendas. Engaging the community in the design and implementation of genetics research can be a useful method of bridging the trust between minority communities and the research institution. Additionally, community-academic partnerships can be beneficial in addressing the barriers of genomics research and testing by providing useful collaborations in defining perspectives on race and genetics. Moreover, the information gained from community collaborations can be used to develop policy recommendations relating to genomics research (Jones & Wells, 2007). This study was not intended as advocacy for genetic testing, but to lay the foundation for understanding the health care decisions of African Americans and Hispanic/Latinos in this new era of genetic medicine.
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