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. Author manuscript; available in PMC: 2018 Sep 27.
Published in final edited form as: J Natl Black Nurses Assoc. 2014 Jul;25(1):25–32.

Factors Associated with African-American Women’s Decisions to Participate in Genetic Research

Carolyn H Still 1, Faye A Gary 2, Patricia E McDonald 3, Hossein N Yarandi 4
PMCID: PMC6159912  NIHMSID: NIHMS954804  PMID: 30270971

Abstract

The purpose of this study was to determine the factors that are associated with African-American (AA) women’s decisions to participate in genetic research. Using a descriptive correlational design, a convenience sample of African-American women (age ≥ 40) was recruited from various locations in the Midwest. During semi-structured interviews, demographics, psychological factors, knowledge of and attitudes toward genetics were collected. Of the 98 women (mean age 53), 66% indicated that they were unwilling to participate, despite having positive attitudes. Correlations were found between genetic knowledge and attitudes toward genetics (r = .35, p = .001), and decision-making to participate and attitudes toward genetics (r = .40, p = .001). Data revealed decisions were largely associated with their lack of knowledge and resulting perceptions. Efforts should be made to inform African-American women about the benefits of the new science through planned, culturally specific, and sensitive interventions that incorporate genetic and health literacy programs.

Keywords: African-American women, chronic health conditions, genetic research, health disparities

Introduction

Chronic health conditions such as heart disease, stroke, cancer, respiratory disorders, and diabetes are among the top 10 leading causes of illness and disability, accounting for 76% of all deaths in the United States (Heron, 2011). Advances in genetic science have led to the identification of genes that predispose individuals to certain diseases (National Office of Public Health Genomics [NOPHG], 2011). These scientific advances have resulted in expanded knowledge about complex chronic health disease processes such as hypertension and diabetes (Scheuner, Sieverding, & Shekelle, 2008). Genetic science, including genetic testing, could assist with the development of novel approaches for the elimination of health disparities (Need & Goldstein, 2009; Squassina et al., 2010).

Background and Significance

In the African-American community, chronic diseases abound. Approximately 48% of African-American adults suffer from chronic diseases when compared to 39% of the general population (Mead et al., 2008). For example, African-American women are 1.4 times more likely to have hypertension and are 2.0 times more likely to have a stroke or to be diagnosed with diabetes (Office of Minority Health and Health Disparities [OMHD], 2010). Despite vast improvements in healthcare, racial/ethnic minorities continue to experience a disproportionate burden of poorer health outcomes and premature deaths (National Center for Health Statistics [NCHS], 2011). In terms of genetic discoveries, the vast majority of the research conducted on selected chronic health conditions often included insignificant numbers of diverse racial/ethnic minorities and women participants (Durant et al., 2007; Ford et al., 2008). Furthermore, because racial/ethnic minorities, including African-American women, have not traditionally participated in genetic research, it limits the generalizability of research findings and further compromises the potential for knowledge expansion and development of genetic possibilities for African-American women (Haga, 2010; Paskett et al., 2008).

Perceptual Barriers to Participating in Genetic Research

The question becomes, “Why are African-American women not participating in genetic research?” Explanations for this conspicuous absence in research may be attributable to African-Americans’ historically negative perceptions about genetic investigations (Achter, Parrott, & Silk, 2005; Furr, 2002; Kessler, Collier, & Halbert, 2007; Shavers, Lynch, & Burmeister, 2002). Among the frequently mentioned perceptual barriers are their fears of being treated like “guinea pigs”; the anticipated disrespect and insensitivity to their cultural beliefs and practices that might be communicated by the researchers/professionals; and the anticipated breach of their privacy and confidentiality (Kennedy, Mathis, & Woods, 2007; Paskett et al., 2008). Other factors include the women’s lack of knowledge about research benefits to health outcomes and their overall distrust for the research enterprise (Ford et al., 2008; Kennedy et al., 2007). Other factors that need to be considered include religious beliefs/practices and the emotional distress of knowing about a certain disease state without the necessary resources for addressing that condition (Smith et al., 2007; Wendler et al., 2006).

African-American Women’s Knowledge of and Attitudes Toward Genetics

Major factors often cited in the literature as an influence to participating in genetic research are the knowledge of and attitudes toward genetic research. Knowledge (factual and/or perceived) about genetics could influence African-American women’s attitudes and willingness to participate in genetic research (Ford et al., 2008; Smith et al., 2007). The state of the science regarding women’s genetic knowledge and attitudes, testing, and research participation has been derived from a homogeneous sample of individuals, primarily White women, about disease conditions such as breast cancer and related research (Haga, 2010). Researchers have suggested that there is an association between general genetic knowledge and attitudes toward genetic testing (Achter, Parrott, & Silk, 2005; Furr, 2002; Morren, Rijken, Baanders, & Bensing, 2006).

Purpose of the Study

The purpose of this study was to examine the factors such as social environment, psychological characteristics, chronic health conditions, and genetic knowledge and attitudes that are associated with African-American women’s decisions to participate in genetic research.

Conceptual Framework

The parent study “Health Status and Health Practices Among African American and Afro Caribbean Women (HSHP)” was guided by the theoretical underpinnings of the Social Determinants of Health model (SDH) (Marmot & Wilkinson, 2006). However, to guide this study, the authors extracted concepts from SDH and the Health Belief Model (HBM) (Becker, 1996). Factors defined in this study include social environment, psychological characteristics, chronic health conditions, and genetic knowledge and attitudes.

The underpinnings of the SDH model was developed from public health principles, which postulates that human health and the impact of social and economic conditions result in ill health and elevated morbidity and mortality rates on world populations (Marmot & Wilkinson, 2006). Thus, the circumstances in which people live and work affect their health. The intent of the HBM was to explain and predict health promotion and preventive behaviors of people who were free of illnesses to maintain or improve their health through three components: individual perceptions, modifying factors, and the likelihood of actions-intention (Becker, 1996). From the HBM, the component “likelihood of action-intention” was used to further understand why some individuals are willing to participate in genetic research and others are not.

Thus, it was hypothesized that selected determinants of health and genetic knowledge and attitudes may be associated with decisions of African-American women with chronic health conditions to participate in genetic research. Specifically, this article will focus on selected determinants of health (i.e., sociodemographics, social environment, psychological characteristics, and chronic health conditions) and genetic knowledge and attitudes. Furthermore, the extent to which each of these factors is correlated with decisions to participate in genetic research has not been fully determined in this population (See Figure 1).

Figure 1.

Figure 1

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Conceptual Model

The following research questions were addressed:

  1. What are the profiles of social structure (income, marital status, employment, education, insurance status), social environment (social support), psychological characteristics (depressive symptoms and life stressors), and health behaviors (health promotion and prevention) among African-American women with chronic diseases?

  2. What are the relationships among study variables such as the social determinants of health (social structure, social environment, psychological characteristics, health behaviors, and health status), chronic conditions, genetic knowledge and attitudes, and decisions to participate in genetic research among African-American women with chronic diseases?

Methodology

In this study, a descriptive correlational design was used to explore factors that influenced decisions to participate in genetic research among African-American women using data collected from the parent study, HSHP. The HSHP study is a component of a multi-site research project affiliated with the Nursing Division at the University of the Virgin Islands, funded by the Center on Minority Health and Health Disparities and the National Institutes of Health (P20MD002286). One objective of the multi-site project was to focus on the health status and health practices of African-American and Afro Caribbean women. Data was collected from August 2007 to December 2010 in one metropolitan city in the Midwest in the United States (N = 206) and two neighboring islands in the U.S. Virgin Islands (N = 202). Data for the parent study and current study were collected simultaneously. This study sample was restricted to women from the Midwest.

Setting and Sample

A convenience sample of African-American women (N = 98) were recruited from various public locations in the Midwest metropolitan area, including churches, beauty shops, and community centers within a 50-mile radius of a major university with world class medical facilities. Eligible women could participate if they self-identified as an African-American, were ≥ 40 years of age, and reported having one or more chronic health conditions diagnosed by a physician and/or taking prescribed medications.

Institutional Review Board Approval

Approval was sought and obtained by the university’s institutional review board prior to any data collection.

Procedures

Prior to beginning the data collection, meetings were scheduled with community leaders and organizations to provide them with an opportunity to learn about the study. Nurse researchers were trained on the nature of the research and the study protocol prior to collecting data. One hour structured face-to-face interviews were conducted at each participant’s preferred location. All research-related information, including the informed consent and data collection measures, was read to the women. At the end of the data collection, the women were provided materials on chronic health conditions (e.g., hypertension, diabetes, obesity, and breast cancer) and other conditions that are prevalent in African-American women. All of the women received $20 as a gratuity for their time.

Instrumentation

Measures that were analyzed in this study were the following:

Demographic Questionnaire

Demographic Questionnaire (DQ) is a subscale of the Menopausal Health Survey, a 92-item measure (Rothert et al., 1997) comprised of general demographic information and seven subscales about other women’s health issues. Relevant socio-demographic information such as age, education, income, marital status, and health insurance status were used to describe the study sample. In addition, a single item on the DQ survey was used to assess perceived health status, “What would you say your health is?” Responses included: (1) poor; (2) fair; (3) good; or (4) excellent.

Life Stressors Questionnaire

Life Stressors Questionnaire (LSQ) (Holmes & Rahe, 1967), a 43-item scale of life events during the past 2 years (e.g., death of spouse, foreclosure of home, etc.), was used to operationalize social environment. In addition to a dichotomous response (yes or no) if the particular life event took place, each life event was assigned a scale value (e.g., death of spouse = 100) to be computed for a total score, further divided into four categories of risk for stress and the potential for ill health. Categories included: 1 = scores of 150 or less (slight risk of stress-induced illness); 2 = scores from 151 to 250 (potential for a stress-induced illness); 3 = scores from 251 to 350 (a moderate risk, or a 50% chance of a stress-induced illness); and 4 = scores greater than 351 (severe risk, or a 80% chance of a stress-induced illness).

Beck Inventory-II

Beck Inventory-II (BDI-II) (Beck et al., 1996) is a self-reported 21-item scale that measures the severity of depression through the screening of cognitive and physical depressive symptoms that have been present for the past 2 weeks. Total scores ranged from 0 to 63, with higher scores indicating more depressive symptomology. The alpha coefficient for BDI-II in the study sample was .89.

Charlson Comorbidity Index

Charlson Comorbidity Index (CCI) is a 22-item scale developed by Charlson, Pomeri, Ales, and MacKenzie (1987) that predicts 1-year mortality rates based on chronic health conditions. The first part of the CCI is displayed on a nominal scale to capture the presence (1) or absence (0) of a disease. Each item is based on a dichotomous response (yes or no) in which the participant was asked, “Has a doctor ever told you that you have any of the following conditions?” Scores on the CCI were computed to represent a sum of chronic health conditions, ranging from 0 to 22. Higher scores indicated more chronic health problems.

Perceived Genetic Knowledge and Attitudes

Perceived Genetic Knowledge and Attitudes (PGKA) is a 24-item self-reported questionnaire that examined genetic knowledge and attitudes in a sample of Netherlanders with chronic health conditions (Calsbeek, Morren, Bensing, & Rijken, 2007). The PGKA questionnaire was divided into two components: genetic knowledge (11 items) and genetic attitudes (13 items) and each component was further divided into two subscales. Genetic knowledge was divided into medical and social knowledge and genetic attitudes were divided into favorable and reserved attitudes. Summary scores were calculated for both components and their subscales. The alpha coefficient for the scales in the study sample ranged from .70 to .92.

Decisions to Participate in Genetic Research

Decisions to Participate in Genetic Research (DPGR) is a self-reported 27-item, investigator developed measure, designed to query the sample about relevant factors that may influence their decisions to participate in genetic research (Harmon, n.d.). Examples of these items included personal beliefs, social factors, perceived benefits and disadvantages of participating in genetic research, in terms of donating and storage of DNA specimens for future use by researchers. To facilitate data interpretation for study analyses, seven items were further recoded and grouped into a subscale for a total score of the respondents’ decisions to participate in genetic research. The alpha coefficient for this scale in the study sample was .87.

Statistical Analysis

Descriptive statistics (measures of central tendency and dispersion, and frequencies) were used to describe the sample of the African-American women’s demographic characteristics, social environment, psychological characteristics, chronic health conditions, and genetic knowledge and attitudes. Pearson’s product-moment correlation coefficient was used to determine the relationships among study variables and decisions to participate in genetic research among African-American women. All data were analyzed using the Statistical Package for the Social Sciences (SPSS) version 17.0 (Raynald, 2007).

Results

Determinants of Health Profile

The African-American women’s (N = 98) demographic characteristics are described in Table 1. In addition to sociodemographics, psychological characteristics and social environment were used to explore the women’s selected determinants of health. In terms of the women’s psychological characteristics (M = 9.09, SD = 7.36), the majority of the women (81.6 %) reported minimal to no depressive symptoms, BDI-II score that ranged from 0 to 13 (See Table 1).

Table 1.

Demographic Characteristics of African-American Women With Chronic Health Conditions (N = 98)

Characteristics Frequency %
Age (M = 53.08, SD = 8.97)
Marital Status
Married 28 28.6
Not married 70 71.4
Education
Less than high school 9 9.2
High school graduate/GED 40 40.8
Technical trade/Associate degree 21 21.4
College/Graduate degree 28 28.3
Employment Status
Employed 63 64.2
Not employed 35 35.7
Health Insurance
Insured 88 89.8
Not insured 12 12.2
Income
Less than $24,999 34 34.4
$25,000 - $49,999 37 37.0
$50,000 - $99,999 17 17.3
Greater than $100,000 10 10.2
Chronic Health Conditions
At least one chronic condition 17 17.3
At least two chronic conditions 25 25.5
Three or more chronic conditions 56 57.1
Specific Chronic Health Conditions
Cardiovascular disease risk factors
 High cholesterol 36 37.0
 Obesity 54 55.0
Chronic pulmonary disease 28 29.0
Diabetes 24 24.0
Hypertension 54 55.0
Musculoskeletal/inflammatory disorders 34 35.0
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Life events that occurred in the women’s social and work environments suggested that the women were at moderate risk for a stress-induced illness, accident, or some other undesirable outcome (M = 2.5, SD = 1.24). Over one-third (34.7%) of the women manifested LSQ scores greater than 350, suggesting that they were at severe risk, an 80% chance of experiencing a stress-induced illness. Twenty-nine percent of the participants obtained a LSQ score of less than 150, indicating no chance of, or a slight risk of, experiencing a stress-induced illness.

Genetic Knowledge and Attitudes

Overall, the women reported being somewhat knowledgeable of genetics (M = 6.94, SD = 5.82) and 32% reported having a considerable amount of knowledge on the subject, whereas 20% reported having little to no knowledge. Notably, the women generally had positive feelings (M = 49.41, SD = 9.91), but 10% were ambivalent and 3% had no opinions.

Decision to Participate in Genetic Research

Approximately 65% of the women indicated that they were unwilling to participate in genetic research. Table 2 illustrates the responses of the sample to the DPGR sub-scale. Given that participation in genetic research involves the collection of DNA, the participants were asked about various DNA collection methods. The women reported that they were more likely to participate in genetic research if the DNA collection method was the cheek swab (45.9%) or saliva specimens (44.9%). The least desired DNA collection method was a blood draw (36.7%). In addition, if the women would consider participating in genetic research, did they believe that the recently passed federal legislation regarding the Genetic Information Nondiscrimination Act (GINA) would adequately protect them from discrimination with regards to health insurance and employment based on their genetic information? Responses varied among the women: about 23.5% strongly agreed, 28.6% tended to agree, and 10.2% disagreed that GINA would protect them if they decided to participate in genetic research. About 37.7% of the women had no opinion or were not sure if GINA would protect them as research participants.

Table 2.

Decisions to Participate in Genetic Research (Subscale) in African-American Women With Chronic Health Conditions (N = 98)

Statements No (%) Yes (%)
1. How likely are you to agree to genetic testing to determine your risk for a chronic health condition if tests were available? 59.2 40.8
2. How likely are you to participate in genetic research that focuses on chronic health conditions? 64.3 35.7
3. Would you consider participating in genetic research even if there is a possibility that this information may or may not immediately benefit you? 62.2 37.8
4. Are you willing to donate your DNA for chronic disease research to isolate genes that affect other people’s health? 49.0 51.0
5. If you donated DNA for a specific research project, would you mind if your DNA were stored and used for genetic research at a later time? 51.0 49.0
6. Regardless of the specimen collection method, would you be willing to donate your DNA for genetic research? 70.4 29.6
7. How likely are you to participate in genetic research that involves the storage (bio-banking) of your DNA? 85.7 14.3
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When the women were asked about their first and most frequent source of genetic information, 31% reported the news media; 16.3% reported printed materials, 15.3% reported physicians, and 8.2% reported the Internet. Significantly, 3% of the participants reported receiving genetic information from nurses. On the other hand, 19.4% reported that they were not informed about the science of genetics and the human genome. Participants were then asked, “How much does your source of genetic information impact your decision to participate in genetic research?” Approximately 31.6% reported “a little,” 23.5% reported “quite a lot,” and 2.0% reported “completely.” About 34.7% stated that they were not sure whether their source of genetic information influenced their decision to participate in genetic research (See Table 2).

Correlations among Study Variables

The results of the correlational analysis are presented in Table 3. Five of the eight correlations of the selected variables were statistically significant and were greater than or equal to .35, p < .001. According to Cohen (1988), the size of the computed correlation coefficients are considered as medium, however, all the medium size r’s are statistically significant in this study. The results suggested that perceived health status was inversely correlated with chronic health conditions (r = −.54 p < .001) and depressive scores (r = −.54, p < .001). In general, the data revealed that African-American women who reported lower self-rated health statuses (poor to fair) had more chronic health conditions and reported no depressive symptoms. In contrast, chronic health conditions were positively correlated with depressive symptoms (r = .39, p < .001) and life stressors (r = .35, p < .001), such that the more chronic health conditions the women reported, the higher the depressive symptoms and life stressors. Also, life stressors were positively associated with depressive symptoms (r = .50, p < .001), meaning the more life stressors the women encountered, the more depressive symptoms they reported. With regard to the correlations related to decision-making to participate in genetic research and the major study variables, moderate correlations were found between genetic knowledge and attitudes toward genetics (r = .35, p = .001). The results suggested that the more knowledgeable the women were about genetics, the more positive their attitudes were toward genetics. Decision-making for participation in genetic research was positively correlated with attitudes toward genetics (r = .40, p = .001), indicating that women with positive attitudes toward genetics tended to report willingness to participate in genetic research. However, correlations between decision-making to participate in genetic research and other study variables were not statistically significant (See Table 3).

Table 3.

Pearson Correlational Matrix Between Study Measures (N = 98)

Measure (Variable) 1 2 3 4 5 6 7
DQ (Perceived Health Status)  —
CCI −.54***  —
BDI-II −.42*** .39***    —
LSQ −.22† .35***   .50***    —
PGKA-Genetic Knowledge   .11 .10 −.27† −.13  —
PGKA-Genetic Attitudes −.06 .02   .10   .07 .35***  —
DPGR   .00 .01 −.02   .02 .25† .40*** —
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Note. BDI = Beck Depression Inventory; CCI = Charlson Comorbidity Index; PGKA = Perceived Genetic Knowledge and Attitudes Questionnaire; DQ = Demographic Questionnaire; LSQ = Life Stressor Questionnaire; DPGR = Decision to Participate in Genetic Research;

***

= Correlations are significant at the 0.003 level;

†

= Correlations are significant at the 0.05 level, if Type I errors were not controlled for by the Bonferroni Approach.

Discussion

The intent of this study was to explore selected determinants of health and genetic knowledge and attitudes as factors that may correlate with the decisions of African-American women with chronic diseases to participate in genetic research, guided by the integration of two theoretical frameworks (SDH model and HBM). In terms of selected determinates of health, it was found that the women reported multiple stressors in their daily lives, yet they experienced minimal depressive symptomology, but were burdened with multiple comorbidities. In contrast to having multiple chronic health conditions, almost half of the women (49%) in this study sample reported their overall health status as being “good.”

The women were somewhat knowledgeable about medical and social knowledge related to genetics, although a few studies have demonstrated that African-American are less knowledgeable about genetic concepts and terminology (Achter et al., 2005; Kessler et al., 2007; Singer, Antonucci, & Van Hoewyk, 2004). Limited genetic knowledge about genetic concepts and related terminology could be partly explained by the differences in access and utilization of genetic services or testing used by African-American women, their personal health beliefs, and the lack of a medical home (i.e., primary care physician) where they would perhaps have professional relationships with health-care providers where information about genetics and personalized medicine might be shared with them by providers that they trust (Paskett et al., 2008; Shavers, Lynch, & Burmeister, 2002; Singer et al., 2004).

Despite having limited genetic knowledge, this data suggested that the majority of the women (88%) had positive attitudes toward genetics. Consistent with the literature, this study also found that genetic knowledge was moderately associated with genetic attitudes; thus, higher levels of perceived genetic knowledge were associated with a more positive attitude toward genetics (Calsbeek et al., 2007; Morren et al., 2007). The present study also found that attitudes toward genetics positively correlated with decisions to participate in genetic research. Moreover, when examining decision-making theories and research, it has been postulated that individuals make decisions based on their belief systems that embrace culture and personal preferences (e.g., values or past experiences) (Noone, 2002; Pierce & Hicks, 2002), which was not captured in the study.

Limitations of the Study

A few limitations were found in this study that should be mentioned. First, the current study’s selected research design, descriptive correlational, allows the nature of the relationships to be determined, but limits causal inferences. Second, when considering the results of this study, the reader should recall that this investigation explored the women’s intentions to participate in genetic research, but did not provide offers for them to participate in clinical trials that involved genetics or genetic testing, which may not translate into similar rates of participation in programs that involve genetic research. Thus, results should be interpreted cautiously.

Conclusions

This present study found that attitudes toward genetics positively correlated with decisions to participate in genetic research. Yet, even with positive attitudes toward genetics, 65% of the women indicated that they were unwilling to participate. Efforts should be made to inform African-American women about the benefits of the new science through planned, culturally specific, and sensitive interventions that incorporate genetic and health literacy programs. Without engaging African-American women in critical genetic research, these advances in science may not help to identify potential signature diseases among this population. This analysis provides a foundation for further exploration of the variables that are essential for understanding the social determinants of health and factors that may influence decisions to participate in genetic research among African-American women. Further research is needed and should explore belief systems that embrace cultural and personal preferences.

Acknowledgments

The authors would like to gratefully acknowledge all affiliated with this ongoing multisite research project at Case Western Reserve University and the Nursing Division at the University of the Virgin Islands. This research was supported by the Center on Minority Health and Health Disparities, the National Institutes of Health (P20MD002286).

This research was supported by the Center on Minority Health and Health Disparities, the National Institutes of Health (P20MD002286).

Contributor Information

Carolyn H. Still, Instructor of Nursing, Case Western Reserve University, University Hospitals Case Medical Center and Supervisor, Clinical Research, Clinical Hypertension Program, Cleveland, OH.

Faye A. Gary, Medical Mutual of Ohio and Kent W. Clapp Chair and Professor of Nursing, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH.

Patricia E. McDonald, Assistant Professor, School of Nursing, Case Western Reserve University, Cleveland, OH.

Hossein N. Yarandi, Professor, College of Nursing, Office of Health Research, Wayne State University, Detroit, MI.

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