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. Author manuscript; available in PMC: 2025 Sep 18.
Published in final edited form as: J Cult Divers. 2009 Fall;16(3):127–135.

Decisions TO Participate IN Fragile X AND Other Genomics-Related Research: Native American AND African American Voices

VANESSA A JOHNSON 1, KARETHY (KAY) A EDWARDS 2, STEPHANIE L SHERMAN 3, LANCER D STEPHENS 4, WENDY WILLIAMS 5, ALONNA ADAIR 6, MARY HELEN DEER-SMITH 7
PMCID: PMC12443038  NIHMSID: NIHMS2025692  PMID: 19824292

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.

Keywords: 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 Native-American, 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 African-Americans 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., 2004; Sharp & Foster, 2002). A pivotal recommendation is that researchers have a specific understanding and regard for the Native- American tribe or community of African-Americans being studied. This can be accomplished by gaining knowledge of the targeted population’s unique culture (Christopher; Moreno-Jonn et al; Schmidt, 2001)initially through qualitative research and progressing toward experimental paradigms. However, a gap exists in empirical support of these recommendations specific to genetic and genomic research. Therefore, pilot work is essential to illuminate key determinates in Native Americans’ and African-Americans’ participation in genetic and genomic research.

Specific aims of the study were to describe, compare, and contrast among and between Native-American and African-American adults as to the following: 1) factors that encourage or discourage decisions to participate in genomics-related research, 2) beliefs about the influence of health care networks accessed to facilitate or discourage participation in genomics-related research, 3) recruitment preferences to encourage participation in genomics-related research, 4) the association between the type of health problem and the likelihood of participation in genomics-related research. Consistent adherence to a CBPR Model was maintained throughout the research process. This report focuses on the fourth aim, types of gene testing.

For this aim, we used fragile X associated disorders as our example. Fragile X Syndrome (FXS) and other Fragile X associated disorders caused by changes in the FMR1 gene is located on the X chromosome. FXS, due to the “full” mutation, is the most common inherited cause of intellectual disability, learning disabilities and psychoneurological disorders. Twenty-five to thirty-five percent of males with FXS also meet the criteria for autism (Bailey, Armstrong, Kemper, Skinner, & Warren, 2008). Early identification and treatment of individuals with FXS is especially crucial and improves the possibility for a higher quality of life and gainful employment as adults(Johnson, 2008). Another form of the mutation, the “premutation,” leads to two different disorders: 1) fragile X-associated tremor/ataxia syndrome (FXTAS), a condition causing tremors, ataxia and cognitive decline in men (also women, but less frequently) and 2) fragile X-associated primary ovarian insufficiency (FXPOI). The expression of these disorders is variable with respect to age at onset and severity and thus complicates genetic counseling.

REVIEW OF THE LITERATURE

The review of the literature yields numerous genomic studies in which participation of Native-Americans and African-Americans is significantly less than that of the Caucasian population(Hipps et al., 2003; Kessler et al., 2005; Moorman et al., 2004; Myers et al., 2000; Olopade et al., 2003). Furthermore, these groups remain underrepresented in a substantial number of studies even though human genome research has spawned a rapid increase in discoveries of genes associated with specific disorders (Bailey, Skinner, Hatton, & Roberts, 2000; Furr, 2002; Furr & Kelly, 1999; Hipps et al., 2003; Lipkus et al., 2004).

The elimination of health disparities requires obtaining new information concerning the complexity of the causes and diagnoses of diseases, effective prevention and treatment interventions, and the causes of health disparities, thus necessitating further genetic research among Native-Americans and African-Americans to identify determinates of disease that will consequently yield a viable strategy to close the gap in health disparities. Previously is was believed that FXS occurs relatively equitably in all racial and ethnic groups (Crawford et al., 1999). However, Crawford and colleagues (Crawford, Zhang, Wilson, Warren, & Sherman, 2000) later identified a possible novel instability of the Fragile X CGG trinucleotide involved in the FMR1 gene mutation repeats in African-Americans which may result in an increased incidence of FXS within African Americans. Similarly, a more recent study indicates possible increased frequency of premutation of FMR1 alleles among Mexicans(Barros-Nunez et al., 2008). Furthermore, Kunst and colleagues’ finding of an increased stability of the CCG trinucleotide repeat of the FMR1 gene in Native Americans has also been reported in the literature, but the sample population studied was only twenty-eight(Kunst et al., 1996). An exhaustive search of literature databases failed to identify any other study of this variant in Native American populations.

The advances in genome analysis, which facilitate knowledge about human disease, has and will continue to expand dramatically. These advances offer the promise of in-depth studies of disease and the variations and distribution of alleles (alternative forms of a gene at a given locus) and haplotypes across populations, as well as the complex interactions between genetic and environmental factors (McQuillan et al., 2006). The Human Genome Project (HGP), a collaborative international project initiated in 1990 whose goals were to identify and sequence the entire human genome, fueled this fervor with the rapid identification of the genetic basis of disorders(Williams & Lessick, 1996). More recently a multi-center human genome diversity project, led by Howard University researchers and Francis Collins, was established to specially study genomic aspects of diseases in African-American(Baffoe-Bonnie, 2007). However, the participation in this geographically diverse multi-site study was a sparse 77 extended families with 418 men with prostate cancer. Therefore, the need persists to identify effective strategies to increase participation of African-Americans in genomics-related research studies.

Obstacles to Participation

A variety of barriers to Native-Americans’ and African-Americans’ participation in genetic research include the following: cultural/spiritual beliefs, mistrust towards the research community, threats of increased stigmatization, and financial and legal threats resulting from information that this type of research could uncover (Schmidt, 2001). A cultural barrier that has been voiced by the Native American community is that genetic research could create conflicting information relating to tribal origin (Dalton, 2004). Additionally, many Native American tribes view human matter sacred, and hold dear a belief that human tissue and genes should not be manipulated but remain in its natural state (Schmidt; Tallbear, 2007) and fear that genetic research will lead to a loss of control over their genes, and biopiracy of those genes will begin).

Mistrust towards the research community is another barrier to Native Americans’ and African-Americans’ participation in genetic research. For instance, Native Americans have a long standing history of exploitation that has been received from various sources, from the U.S. government to the science community (Burhansstipanov, 2000; Christopher, 2005; Dalton, 2002; Tallbear, 2007; Tano, 2006). A source of mistrust also stems from a history of researchers flying into a tribe’s isolated community, obtaining needed research data, leaving and not sharing the results of the research with the tribe (Christopher; Schmidt, 2001; Thompson & Milunsky, 1979). This type of practice has led the Native American population to coin the terms “helicopter researchers” (Schmidt) and “research poachers” (Christopher).

An additional source of suspicion arises from the view that research is done for the sake of science and holds no benefit to the community(Christopher; Tallbear, 2007). A supplemental aspect to this view is that many Native people believe that genetic research is not an answer to disease and health problems and that this form of research is a waste of resources that could be used for health promotion yielding better results( Schmidt, 2001; Tano, 2006).

Similarly, lack of participation among African-Americans is in part due to the mistrust that this group has toward the medical community, in general, and the research community, in particular. This mistrust stems from a history of slaves being used for medical experimentation and the government endorsing research that did not attempt to lessen the effects of certain diseases within this population (Halbert et al., 2004; Laskey et al., 2003). Additionally, the infamous Tuskegee Syphilis study, spanning forty years further solidified this polarizing distrust of the health care establishment, which has greatly negatively impacted African American access of health care. One of the greatest challenges that researchers must address in the recruitment of African-Americans for genetic studies is the establishment of trust(Achter, Parrott, & Silk, 2004; Laskey et al., 2003; Lipkus et al., 2004; Patterson et al., 2005).

Similarly, threats of increased stigmatization are an added factor inhibiting Native Americans’ and African-Americans’ participation in genetic research. A commonly reported trend is that Native Americans believe that genetic research will uncover genes responsible for diseases among the population that could lead to the suggestion that the race is inferior (Schmidt, 2001). For example, a Native-American community was ostracized after a study on syphilis was published in a local newspaper and the tribe’s identity was not appropriately concealed (Christopher, 2005; Moreno-John et al., 2004). Another tribe’s credit ratings were affected adversely after they were identified in a study of alcoholism (Moreno-John et al., 2004). Similarly, Laskey and colleagues’(2005) study of attitudes of African-American premedical students toward genetic testing and screening revealed that the students expressed concerns about the discrimination, privacy, and eugenics as a result of one’s participation in such studies.

Native-Americans also have concerns that genetic research may open a financial and legal Pandora’s Box. They fear that genetic testing may be used by individuals to challenge blood quantum measurements to obtain tribal membership to access revenues created by tribal casinos(Schmidt, 2001). An additional fear is that genetic research could significantly substantiate the Bering Strait theory that Native-Americans migrated to North American by traveling across the Bering Strait, thus possibly jeopardizing their rights to self-determination, territory, and resources (Schmidt).

Mediating Factors in Participation

During roundtable discussion sponsored by the International Institute for Indigenous Resource Management, Native American representatives stressed that “an understanding of Native American attitudes toward genetic research on their community cannot be fully understood absent an appreciation of the interrelationship among native peoples, genetic research, and the landscape (p. 301)”(Tano, 2006, p. 301). However, a major gap remains in that much of the literature fails to identify why Native-Americans and African-Americans do participate in research or genetic research. The literature indicates that both may have increased interests in participating if they believe the results will benefit the community and its health (Christopher, 2005; Matsunaga et al., 1996; Nichter, 1984).

Recommendations to Facilitate Participation

Recommendations cited in the literature to increase Native-American and African-American participation in genetic research suggest that participatory models be employed (Christopher, 2005; Moreno-John et al., 2004; Sharp & Foster, 2002). Researchers have found that including the tribe in the research process and communicating results of the research to the community, increased the Native-Americans’ cooperation and participation in the research(Christopher; Moreno-John et al.). Interventions that appear to increase participation in genetic research more readily in the African-American community are associated with community outreach, using recruiters representing the same ethnicity, and social support (Baty, Kinney, & Ellis, 2003; Hughes et al., 2004; Patterson et al., 2005; Thompson et al., 2003). Support from family and churches were seen as an effective means of endorsing the perception of self-efficacy (McQuillan et al., 2003; Myers et al., 2000). Furthermore, community-focused researchers (Minkler, 2004; Minkler et al., 2002) lauded the CBPR Model, as a “highly promising” approach to increasing African-Americans’ participation in research (p.695).

Establishing trust with the community is also a recurring recommendation found in the literature. Moreno-John and colleagues (2004) suggest that researchers build trust by addressing issues with the community’s reasons for reluctance in participating; and develop relationships with the community, tribal leaders and community-based organizations. Comprehending and implementing the community’s culture and health concerns into the research is crucial. Additionally, providing available resources to the community during a crisis, political advocacy for the community, and employing community members to aid in the research when possible, are other suggested recommendations to facilitate building the trust that is essential to successful community-based participatory research partnerships (Anderson et al., 2005; Christopher, 2005; Davis & Reid, 1999; Ensenauer, Michels & Reinke, 2005; Fouad et al., 2000; Gollust et al., 2005; Henderson et al., 2006; Hutson, 2003;Israel et al., 2005; Katz et al., 2006; Kelly, 1988; Matsunaga et al., 1996; Matthews et al., 2000; McQuillan et al., 2006; Minkler, 2004; Orians, 2004; Patterson et al., 2005; Sharp & Foster, 2002; Stoddart, 2000).

A pivotal recommendation is that researchers have a specific understanding and regard for the Native-American tribe and/or the African-American community being studied, which can be accomplished by gaining knowledge of the targeted population’s unique culture through ethnographic research, initially progressing toward experimental paradigms (Christopher, 2005; Moreno-John et al., 2004; Schmidt, 2001). Furthermore, interventions which appear to increase participation in genetic research more readily in the African-American community are associated with community outreach, using recruiters representing the same ethnicity, and social support (Baty et al., 2003; Hughes et al., 2004; Patterson et al., 2005; Thompson et al., 2003).

Theoretical Framework

The assumptions of this initial study coupled with key concepts of conceptual models frequently cited in studies addressing the under-representation of Native- American and African-Americans in genomics-related research provide rationale for the use of a theoretical framework to guide this scientific inquiry. The constant comparison approach (Corbin, Strauss, & Strauss, 2007), in conjunction with a CBPR approach (Gollust et al., 2005; Israel, 2005; Kelly, 1988; Sharp & Foster, 2002) is also appropriate to the purpose and aims of this study. The successful implementation of a CBPR, is predicated on researchers securing and nurturing a trusting relationship with cultural brokers and members of the targeted Native-American and African-American communities. In this study, a quantitative approach adhered to the central tenants of a CBPR Model.

The successful implementation of a CBPR Model, in which the researchers must secure a relationship with the cultural brokers of targeted Native American and African-American communities, is crucial and a trusting relationship with the members of the community must be established and nurtured. The subsequent quantitative studies will be framed in accordance with the CBPR Model and theoretical underpinnings that have emerged from the preliminary studies.

METHODS

Research Design

The design of this pilot study was a qualitative exploratory field study in which the CBPR approach was core. In keeping with the basic tenets of CBPR, the following steps were implemented: 1) an holistic ethnographic approach in which a cultural guide facilitated entrance into the targeted communities was applied; and 2) meetings with key community leaders in which a needs assessments of the health care research interests for the targeted community were arranged. The same process was implemented in community settings targeting African Americans

Sample and Subjects

The University of Oklahoma Health Sciences Center Institutional Review Board approved the implementation of the research study. This study included a convenience sample of 48 total Native American males and females, and 25 total African-African males and females; all of whom were 18 years of age and older, and volunteered to participate in a focus group. The focus groups were conducted in geographically, socially, and economically diverse churches in various Oklahoma cities and towns in which the majority of the congregation is either Native American or African-American. The representation of Native American participants included eleven tribes and spanned eleven towns, in both urban and rural settings. African American participants were recruited from four Oklahoma cities.

The mean age for Native American respondents was 55.26 years, with a median age of 50 years. Their ages ranged from 18 to 83 years. The mean age for African American respondents was 45.87 years, with a median age of 46 years and a range of 18 years to 73 years.

Data Collection and Analysis

The instruments used in this study were a demographic profile and a Focus Group Facilitation Guide. The CBPR Advisory Committee collaboratively developed and approved all study materials. The Native American CBPR members recruited participants and facilitated the focus groups in which participants of similar cultural / racial backgrounds were in attendance. Whereas the principal investigator, who is an African-American female, along with a trained graduate research assistant of African-American heritage implemented the same process with African-American participants. Semi-structured discussion questions were asked to elicit information about what factors influenced the targeted group members’ decisions to either agree or refuse to participate in genetics and genomics related research. Additionally, a discussion of factors (e.g., perception of the risks, benefits, and opportunities in participating), possibly influencing the targeted cultural groups’ decision to participate in genetic or genomics was facilitated. Finally, participants were asked to describe strategies that would ameliorate the underrepresentation of Native-Americans or African-Americans in genomics-related research. Digital, mini-cassette, and micro-cassette recordings were made at each focus group setting. Additionally, the group facilitator assistant made notes on a flip chart, to which the leader made reference during the focus group discussions. After the transcripts were transcribed verbatim, the group facilitators made notations on the transcripts regarding nonverbal aspects of the interaction. The team opted not to use video-recording due to concerns that this media might result in hesitancy to freely disclose thoughts and feelings.

Demographic data were analyzed with descriptive statistics and constant comparative analysis. Content analysis was used to analyze qualitative data. The NVivo qualitative software program was used to assist in coding, categorizing, sorting, and other aspects of data analyses. Additionally, the Corbin and Strauss constant comparison method was used to analyze the transcripts of the focus groups, and inductively derive categories and themes. The categorized files were reviewed for emergent themes, concepts, and other patterns. Furthermore, all focus group participants were invited to participate in a mail-in “data checking,” process, which involved rating the degree to which he or she agreed with the interpretations of the NVIVO assisted data analysis that the CBPR Advisory Committee posed.

Strategies to control threats to the validity, and enhance the validity of the data for this study included: 1) the principal investigator (PI) meeting with mentors, at least monthly, to facilitate maintenance of the scientific integrity of the research; 2) quarterly meetings and intermittent guidance from CBPR advisory committee and weekly meetings with graduate research assistants (GRAs) to identify validity threats, personal biases, assumptions and flaws in the logic of the methods, data management, data analysis and interpretation of the data; 3) audio recording the focus groups and transcribing verbatim; 4) calculating descriptive statistics of demographic data and comparing those data with discrepant data; and 5) CBPR Advisory Committee, GRAs, and the products of the NVIVO Qualitative Analysis Program, analyzing data to determine referential adequacy.

RESULTS

Preliminary data analyses data indicate that saturation was obtained within the Native-American groups; however, the same has not yet been achieved within the African-Americans sampled. This factor in conjunction with the additional themes that emerge with additional use of the constant comparison method(Corbin et al., 2007) and a desire to further analyze possible associations of demographic data, compel the researchers toward continued data collection and analyses. Nonetheless, the team esteems the preliminary findings as information valuable to facilitating an understanding of the unique ramification of representation of Native-Americans and African-Americans in genomics-related research. Barriers and facilitators to participation, including roles of health care networks, recruitment strategies, and relevance of the type of gene testing are presented.

Barriers to Participation

Barriers to participation included the following: a lack of trust; a fear of a lack of feedback, results, or follow-up; refusals of others; health care network not encouraging participation; a lack of privacy; culture and/or family beliefs; media images; a rear of ostracism; no perceived benefit to self; horror stories; and a fear of the unknown.

“It’s not that I wouldn’t, it’s just that you hear too many horror stories of people who’ve gone for testing and either died or something happened to them... “(Native-American male)

Facilitators to participation included the following: a knowledge about the research; an involvement of people from the community; familiarity with the recruiter / researcher; incentives; the purpose of the study; and the assurance of possible benefit. Responses regarding recruitment included the following: the recruiter is knowledgeable; the recruiter/researcher has a similar racial/cultural background; and that there are incentives (i.e., food, money, health care services).

“we need to be willing to share what we know and work together …it does take a village” (Native-American male-elder)

Gene Test Preferences

The recurrent theme of relevance of the research and the likelihood that the knowledge derived would “help someone” persisted into the discussion of the type of gene test in which one would mostly consider engaging. The multi-systemic, intergenerational impact of Fragile X Syndrome were described as reasons for willingness to participate in FMR1 Gene testing. Interestingly, participates who had adamantly verbalized opposition to participating in other gene testing expressed affirmative ideas relative to Fragile X (FMR-1)Testing.

FMR-1 (Fragile X)

That describes half of our family. You’re looking at this gene and it does run in families, very few studies have Indians included. (Native American male)

See that’s what I was saying, FMR-1, those symptoms we do recognize in our family. So something like that, yes [I would participate]. (Native-American male)

I say yes and could you get your kids tested. What age? As parents, are we allowed to say yes I want my child or family tested? (African-American female)

There’s so many ADD kids out there, you wonder why. Test me so I can help the situation, you know (African-American male)

Sickle Cell

So now the sickle cell trait. It is in that instance to know because then you can have your children tested and if one has the trait then you can tell for them they know that this is something when you’re considering marriage to look at that but it’s something where you do have some control ( African American female)

The recurrent theme of relevance of the research and the likelihood that the knowledge derived would “help someone” persisted into the discussion of the type of gene-test in which one would mostly consider engaging. Both Native-American and African-American participants expressed a willingness to facilitate greater knowledge of several disorders for which gene tests avail. The most frequently discussed were, Fragile X Syndrome, Lupus, Sickle Cell Anemia, Diabetes, and cardiovascular disorders.

Role of Health Care Networks

Most African-American focus group participants expressed never having been approached to participate in any form of research. The group acknowledged that neither direct questioning to participate nor written information regarding research participation was ever presented by their healthcare providers. A greater number of Native-American participants stated they had been asked previously to participate in genomics related research. However, similarly to the African American groups, most Native Americans reported that they had never been approached to participate in genomics-related research. Neither the African American groups nor the Native American participants verbalized a knowledge of FXS. Health care professionals are in a key position to implement pivotal strategies to increase the awareness and earlier detection of FXS and other FX associated disorders. This increased awareness will lead to earlier intervention, not only for the young child, but for the family as well. Health care professionals’ influence in the education of genetic testing would increase patient awareness of testing and the likelihood of participation.

CONCLUSIONS

Although unique cultural and health differences exist between Native Americans and African Americans, similarities manifested between the groups in that themes of the importance of trust and receiving adequate knowledge of information in a manner that was easily understood emerged in both. Similarly, co-investigators in a Survey Exploring the Attitudes of Native Americans on Research Participation found concerns of physical harm, benefit, autonomy, environmental comfort, beliefs about research, convenience, incentives, importance of family and community, being informed, trust, being valued, and cultural observations as key factors (Lampley-Dallas, Edwards, Stephens et al (2008). Furthermore, we discovered that the Native Americans expressed a stronger desire that the researcher or recruiter shares racial and ethnic heritage; whereas the African American stated that as long as trust was established that a shared heritage with the researcher is not essential. Comparison and contrasts of the groups in light of community leadership structure yield information that may effective contribute to theory development, practice models, and policy to more effectively address health disparities.

Themes supporting the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research emerged. Community-Based outlooks on genetic research may significantly enhance meaningful participation of racial and ethnic minorities. As society becomes increasingly diverse; the necessity of research to responsibly and accurately reflect this diversity becomes pivotal to rigorous scientific methods. The incorporation of racial and ethnically diverse groups is no longer an acetic necessity; but a methodological necessity. To bridge the health disparities gap, it does “take a village.” Furthermore, both the groups of Native Americans and African-Americans expressed that equitable researcher-community member partnerships will facilitate a sense of eagerness to collaboratively work to eliminate genetics related health disparities.

Subsequent studies will verify the degree to which the focus group findings are representative of larger populations. It is imperative that researchers identify strategies to facilitate representation of African-Americans, Native Americans and other underrepresented groups’ in clinical research of Fragile X and other genetic disorders. These actions will greatly enhance scientists’ ability to obtain results that are applicable to each ethnic group and thereby development and implement effective culture specific treatments.

Table 1.

Study Group Female Male Mean Age Median Age Age Range
Native Americans 34 (73.9%) 12 (26.1%) 55.26 Years 50 Years 18–83 Years
African-Americans 19 (79.2%) 5 (20.8%) 45.87 Years 46 Years 18–73 Years
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Table 2.

Focus Group Facilitator’s Discussion Guide Excerpts

Number Question Comment
1 What health issues do you feel are important and which health issues would like to see emphasized more? List issues on flip chart, keeping the issues list visible throughout the session and making additions whenever required.
2 What role do you believe genetics and gene testing play in addressing the health issues that are of greatest importance to you? List on flip chart.
3 What factors influence your decision to participate in genetic / genomic related research. List on flip chart
4 What influences your decision to refuse participation in genetics / genomics related research. List on flip chart
5 Do health care networks encourage or discourage participation in genetic or genomic research. Count show of hands - yes/no
6 What recruitment strategies would cause you to participate of in genetics /genomics related research. List on flip chart
7 What types of gene testing would you be willing to participate in and why?
Note: The leader presented and facilitated discussions of scenarios regarding the use of genetic testing.		 List on flip chart
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ACKNOWLEDGEMENTS

The research was supported by the American Nurses Foundation Mary Elizabeth Carnegie Scholars Program, The Southern Nursing Research Society Small Grant Award, and the National Institutes of Health Nation Center on Minority Health and Health Disparities Loan Repayment Program for Clinical Researchers PA-06–517. Special thanks to the focus group participants and the Community Based Participatory Research Advisory Committee members.

Contributor Information

VANESSA A. JOHNSON, Assistant Professor in the University of Oklahoma Health Science Center (OUHSC) College of Nursing in Oklahoma City, OK.

KARETHY (KAY) A. EDWARDS, Co-Director of the Center for Cultural Competence & Healthcare Excellence at the OUHSC.

STEPHANIE L. SHERMAN, Professor in the Department of Human Genetics at Emory University.

LANCER D. STEPHENS, Executive Director of the OUHSC General Clinical Research Center Special Populations.

WENDY WILLIAMS, Instructor at the Tulsa Technology Center Health Sciences Department.

ALONNA ADAIR, Program Director of the Native American International Caucus of the United Methodist Church-Program Director.

MARY HELEN DEER-SMITH, Program Director of the OUHSC College of Nursing Graduate Student, Native American International Caucus of the United Methodist Church.

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