African American women's perceptions of the role of genetics in breast cancer risk.
African American women
Breast cancer (Risk factors)
Cancer (Genetic aspects)
Mammography (Social aspects)
Duncan, Veronica J.
Parrott, Roxanne L.
Silk, Kami J.
|Publication:||Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Newsletter Subject: Health Copyright: COPYRIGHT 2001 American Journal of Health Studies ISSN: 1090-0500|
|Issue:||Date: Spring, 2001 Source Volume: 17 Source Issue: 2|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
Abstract: African American women face an unequal breast cancer
burden, due to known contributors, such as lack of access to health
care, diet and sedentary lifestyle, as well as speculative causes as
geographic location and heredity. African American women's
perceptions regarding the role of these four variables--genetics, social
environment, physical environment, and personal behavior--on breast
cancer incidence were evaluated through the use of four focus groups.
Results revealed that African American women overestimated the influence
of genetics and underestimated the impact of other variables on breast
cancer incidence. This belief in genetic determinism is considered both
in terms of its likely impact on perceptions of self-efficacy regarding
breast cancer prevention and detection, and as a variable to address in
health communication messages designed to promote mammography among
African American women.
Researchers have contended that African Americans suffer from the effects of what some have called the "cancer burden" disproportionately (Greenberg & Schneider, 1995; Sadler, Thomas, Dhanjal, Gebrekristos, & Wright, 1998; Underwood, 1998). This is illustrated partly by African American women's higher mortality rate from breast cancer compared to European American women (Altpeter, Earp, & Schopler, 1998; Breen & Figueroa, 1996; Yood et al., 1999; Weiss et al., 1995). Several variables, including social, environmental, personal behavior, and heredity may account for differences in mortality between African American and European American women due to breast cancer. However, limited research exists on African American women's perceptions regarding the impact of these variables on their breast cancer risk (Lipkus, Iden, Terrenoire, & Feaganes, 1999). This study sought to address this gap in understanding through an in-depth qualitative examination of African American women's perceptions of the impact of various contributors to breast cancer. The results afford important insights for future health communication efforts aimed at increasing African American women's perceptions of self-efficacy relating to breast cancer.
AFRICAN AMERICAN WOMEN AND BREAST CANCER
The differences in mortality and five-year survival rates for European American and African American women due to breast cancer have been identified in previous research (Altpeter et al., 1998; Breen & Figueroa, 1996; Underwood, 1998; Weiss et al., 1995; Yood et al., 1999). According to Surveillance, Epidemiology, and End Results (SEER) (Ries, Kosary, Hankey, Miller, Harras, Edwards, 1997), there are significant differences in the five-year survival rates for African American women (70.0 per 100,000) and all other races of women (84.2 per 100,000). Although a number of reasons for the differences have been identified, some variables emerge consistently across studies. These include low socioeconomic status (SES), lack of access to health care, low screening rates, and later stage of disease at detection. Much of the research focuses on the later stage of the disease at detection, relating this contributor to the lack of access to health care (Altpeter et al., 1998; Breen & Figueroa, 1996; Forte, 1995; Mandelblatt, Yabroff, & Kerner, 1999; Shaw, 1996; Underwood, 1998; Weiss et al., 1995). Lack of access to health care contributes to a decrease in the availability and use of mammography, and an increase in diagnosis at later stages of breast cancer. Both are associated with increased breast cancer mortality rates.
While health care access and other societal contributors are important to address in health policy efforts to reduce the incidence of breast cancer among African American women, the picture appears to be far more complex. Yood et al. (1999), for example, found that even among women in a managed care population who had access to health care, there remained ethnic differences in the stage of breast cancer at diagnosis, with African American women's cancer being more advanced than among cancer of European American women. When there were statistical adjustments for stage difference, income, age, and marital status, the differences between the two races of women were not smaller, yet African American women had significantly higher mortality rates than their European American counterparts. Similarly, Wojcik, Spinks, and Optenberg (1997) examined European American and African American women treated in U.S. military health care facilities with equal access to health care and treatment options. They found that access to health care and treatment options decreased the mortality rate for African American women military beneficiaries (24.77%) when compared to other African American women (34.2%). However, equal access to health care and treatment options did not remove significant differences in mortality rates between African American (24.77%) and European American (18.08%) female military beneficiaries (Wojcik et al., 1997).
Some researchers have suggested the possibility that breast cancer tumors for some unknown reason, may function more aggressively in African Americans than in European Americans (Connor, Touijer, Krishnan, & Mayo, 2000; Wojcik et al., 1997). While this genetic link has not been validated, genes have been identified as a risk factor based on family history of cancer (Lipkus et al., 1999; Panguluri et al., 1999). Genetic mutations (e.g., BRCA1) have been associated with the occurrence of breast cancer (Panguluri et al., 1999), although genetic researchers clearly acknowledge that genes and the physical environment interact, with each variable contributing to the effects of the other (Cole-Turner, 1999). It has been argued, for example, that individual susceptibility based on heredity plays an important role in determining the actual health harms likely to accrue as the result of an individual's exposure to environmental toxins (Garte, 1998). Thus, the individual's susceptibility due to the role of genetics may mean that lower levels of exposure to the same toxin may result in cancer for one person and not for another.
Beyond the role of social and genetic contributors to African American women's higher breast cancer incidence, research also suggests that there may be geographic correlates to this incidence of cancer. More new occurrences of cancer in African American men and women have been reported in the Southeast (Jessup, Menck, Winchester, Hundahl, & Murphy, 1996) and among Southern-born African Americans (Greenberg & Schneider, 1995). Whether this increase in incidence relates to the physical environment, social conditions for African Americans in the Southeast, and/or personal behaviors--including diet and exercise, or the interaction among these contributors is not known. Research has also associated personal behaviors, including diet, smoking, drinking, and other lifestyle choices, including being sedentary, with increased risk for breast cancer (Underwood, 1998). Thus, the Jessup et al. (1996) findings may be the result of environmental factors uniquely affecting individuals in the Southeast; dietary practices and obesity; lifestyle choices such as smoking, drinking, and/or sedentary lifestyle; or cultural beliefs and practices that subsume several of these issues. Regardless of why these differences exist, it is imperative to understand how African American women perceive breast cancer risks, as this information may be used to contribute to the design of health communication strategies to increase perceptions of self-efficacy with regard to breast cancer incidence.
SELF-EFFICACY AND BREAST CANCER
One of the most significant outcomes of individual knowledge and outcome expectancies is self-efficacy, or one's confidence in the ability to gain and maintain control over inputs to a particular behavior (Bandura, 1997). One goal of health communication messages associated with breast cancer risk is to increase women's levels of perceived self-efficacy to gain and maintain control over the resources necessary to behave in ways likely to identify and reduce risk, including the adoption of low fat diets and preventive screenings. However, if women believe the risk is largely outside the sphere of personal behavior and influence, messages promoting changes in personal behavior are likely to be ignored. Understanding women's perceptions of the genetic, environmental, social, and personal contributions to breast cancer risk, therefore, affords greater opportunities to design efficacious health communication messages. Several variables suggest some insights about African American women's beliefs concerning breast cancer risk and their confidence in their ability to prevent and detect breast cancer.
The debate surrounding mammography screening lends some insight into the necessity of communicating in a clear and precise fashion to increase the lay public's understanding of the behaviors to be performed to prevent and detect breast cancer, as well as their confidence in the ability to carry out recommended behaviors. In order to feel confident about their ability to obtain a mammogram, women need to understand the purpose of this diagnostic test, at what age they should begin to obtain a mammogram, and how often they should obtain the exam. Yet, messages about mammography have contributed to women's confusion regarding this preventive practice. Woolf and Lawrence (1997) noted that the National Institutes of Health convened a special panel to examine the scientific evidence associated with mammography, and that the NIH panel recommended that women between 40 to 49 years of age talk with their physicians about their personal values and breast cancer risk factors to decide how often to seek a mammogram. Women's values, which vary widely and need to be respected, should be factored into decision-making processes, but clear and specific guidelines are needed to increase individuals' confidence about their abilities to make decisions and to behave in a recommended fashion.
Messages associated with media reports about a `breast cancer gene' may be even more confusing to women than the advice offered to women in their 40s about how often to obtain a mammogram. Human genetics information is complex, abstract, and technical, requiring that receivers of genetic-related information be literate if understanding is to occur. One study found that when parents received information about a prenatal diagnosis of sex chromosome abnormality, 26.2% of the parents reported that the reading materials were not helpful because they were too scientific and clinical; the materials were just copied from a medical textbook (Petrucelli, Walker, & Schorry, 1998). The math equivalent to literacy is numeracy, which is defined as the mathematical skills that enable people to function in the practical demands of everyday life (Steen, 1991; Schwartz, Woloshin, Black, & Welch, 1997). Both numeracy and literacy are crucial parts of individuals' success in maneuvering in our society. "Numeracy and literacy are the entwined complements of human communication" (Steen, 1991, p. 212). Many efforts to communicate health information to the public depend upon the use of verbal expressions and numerical information (Hallowell, Statham, Murton, Green, & Richards, 1997). Research has found that as numeracy increased, individuals' ability to calculate their benefit from mammography more accurately also increased (Schwartz et al., 1997). This finding points to the critical importance of providing clear verbal and numerical presentations of information to increase African American women's perceptions of self-efficacy in association with breast cancer incidence and risk.
Since the media began reporting about a "breast cancer gene," women have increased their efforts to seek information about their individual breast cancer risk. Evidence suggests that messages have failed to convey which women are more likely to be at greater risk in association with genes and breast cancer incidence. "Many of these women will [may] not have a family history that suggests the presence of a highly penetrant breast cancer susceptibility gene. However, a small subset of such women will come from families with a striking incidence of breast and other cancers often associated with inherited mutations...." (Hoskins et al., 1995, p. 577). Women with inherited mutations may benefit greatly from awareness of genetics research in their decision to seek testing. Women without a family history may impose unnecessary fear, and undue emotional and financial burdens on themselves, perhaps increasing perceptions of cancer fatalism while decreasing perceptions of self-efficacy with regard to breast cancer incidence.
One explanation offered for later stage of cancer detection among African Americans is cancer fatalism in the African American community (Champion, Menon, McQuillen, & Scott, 1998; Powe, 1996). Definitions and operational definitions for cancer fatalism vary depending on the authors and methods used in the study. However, some of the most common definitions are provided in a review of literature on cancer fatalism among African Americans. For example, according to Powe (1996) "fatalism is believed to be the result of a complex psychological cycle characterized by perceptions of helplessness, worthlessness, meaninglessness, powerlessness, and social despair" (p.387). From this definition, the significance of perceptions of self-efficacy with regard to social factors contributing to illness and disease become apparent. If African American women perceive the variables mostly contributing to their increased incidence of disease to be beyond the control of their personal behavior, messages to promote personal behaviors will have little effect. Powe (1996) also states that "in addition to poverty, oppressive forces such as the long history of slavery, segregation, discrimination, substandard health care, and the subsequent perceptions of meaninglessness, hopelessness, and social despair provide the environment for the emergence of cancer fatalism" (p. 18).
Not surprisingly, people with more fatalistic attitudes have been found to be less likely to take advantage of preventive services (Conrad, Brown, & Conrad, 1996; Powe, 1995, 1996). In a study of fatalism, Conrad et al. (1996) found African Americans and women to be more fatalistic than European Americans and men. Thus, women and particularly African American women might be less likely to seek mammograms if they are afraid of cancer, believing that anytime one has cancer it will be fatal and result in death. Not only is their willingness to seek mammograms inhibited, but their willingness to seek out information or even think about cancer is also diminished (Champion et al., 1998). Thus, it is dearly imperative to understand African American women's perceptions of the impact of genetic, environmental, social, and personal contributors to breast cancer incidence. With this understanding, health communicators will be able to tailor messages to address these contributors to risk, which may contribute to an increase in African American women's perceptions of self-efficacy and decrease their feelings of fatalism related to breast cancer control:
RQ: What are African American women's beliefs about the role of genetics, the environment, social factors, and personal behavior as contributors to breast cancer incidence?
PARTICIPANTS AND PROCEDURES
During the winter and spring of 2000, four focus groups (n=5, n=4, n=3, and n=2, respectively) comprised of African American women between the ages of 19 and 40 were conducted in a southeastern town associated with a large land grant institution. As Stewart and Shamdasani (1990) assert, "Most focus group applications involve more than one group, but seldom more than three or four groups" (p. 58). Participants were recruited using a variety of methods, including telephone solicitation via random digit dialing, trained community sponsor recruitment, and a snowball technique where women from churches and beauty salons were encouraged to use their personal network and bring a friend to the focus groups. Potential participants were advised that: (1) focus groups would last one to two hours and be held at varied times during the day and evening; and (2) they would receive a $50 honorarium for participating and be served a light meal during the meeting. Despite the multiple strategy approach often required in the recruitment of minorities for focus groups (Pentz, 1995) and the incentives offered, participation in focus groups was relatively low. Follow-up phone calls to some individuals who had agreed to participate but did not show up revealed that the topic was perceived as a particularly sensitive one that individuals felt reticent about discussing, with their lack of knowledge being offered as the most frequent explanation. Although a small sample size has inherent limitations, the data provide insight at the formative stage of research for which this particular study was designed, and the constancy with which the participants discussed the issues further supports the validity of the conclusions to be drawn. Those who agreed to participate received a reminder phone call the night before the scheduled meeting, as well as specific directions to the location of the meeting, and a parking voucher. Transportation following the focus group meetings was made available, as was child care during the focus group meetings.
The mean participant age was 31.07 years (SD = 5.53), with 92.5% reporting that they had taken a biology course in high school (64.3%) or college (28.6%). The majority of the sample reported that they had not received any genetic testing (78.9%), while one woman did not know if she had received genetic testing. The income level of the participants ranged from less than $10,000 to greater than $100,000. The mean income range was from $25,000 to $40,000 with 35.7% of the participants falling in this range. A one way ANOVA revealed no significant differences at the p < .05 level between individuals making less than the mean income, as compared to those in the mean income category, or those making more than the mean income level for frequencies of responses to the questions. Two participants did not, however, provide information about their income. In terms of their religiousness, 50% said they were very religious and 42.9% considered themselves somewhat religious. One participant changed the word religious to spiritual, while another participant did not answer the question. Participants were also asked about the number of children they had, with 42.9% stating that they did not have any children, 42.8% had two or three children, while two participants had five children each. The majority (89.7%) had health insurance.
MODERATOR TRAINING AND GUIDE
The moderator received training in a two-hour seminar on human genetics, a scientific topic few members of the lay public feel comfortable discussing or qualified to discuss. Specific information about how to conduct the focus groups was provided, including how to open and close the sessions, encourage participation from all persons present, and address requests for genetics information and resources. The moderator guide was discussed, including opportunities for practice and questions from the moderators. (1)
Focus group sessions were conducted by one moderator who was the same race, gender, and age range as the participants in the focus groups. Focus groups were audiotaped and videotaped and later transcribed using the audiotaped versions of the meetings. The specific question examined in this study was, "With regard to our health and whether we are likely to get breast cancer before the age of 40, how important are genes, environment, social factors, and personal behaviors relative to each other." Moderators instructed participants to indicate their beliefs on pie charts she provided the participants, instructing them as follows, "Now, I am going to ask you to rank the influence of genes, environment, social factors, and personal behaviors on breast cancer, using the pie charts I am handing out. Using the charts, draw how much influence each of these have on breast cancer." (2) Participants were then presented with a pie chart and asked to depict the role that each of the four variables played in a woman's risk for breast cancer. The moderator indicated that the environment included physical and geographic features, including air and water quality, temperature, and so on. Social factors were defined as including such things as access to health care and cultural beliefs. Personal behavior was defined in terms of lifestyle choices, including diet and exercise. After all the women had filled out a pie chart, each participant was asked in turn to share her responses with the group and to explain why she chose to depict her chart as she had done, and the group was asked to discuss each participant's responses. This provided the open-ended data to be used for comparison with and clarification of the quantitative information that was collected.
For each participant's pie chart, a percentage scored template was laid over respondents' answers, and a corresponding percentage score was assigned to the individual responses for each of the four possible variables. Absence of a variable on the chart was scored zero percentage influence. The Statistical Package for the Social Sciences (SPSS) was used to obtain the mean, median, and range of frequencies for the participants' responses. The participants' focus group discussions were transcribed verbatim and examined using the Non Numerical Unstructured Data Indexing Searching and Theory-building (NUD * IST), with the text search for "breast cancer" entered without restriction, allowing the presence of discussion about breast cancer outside the parameters of the specific question addressed in this study to emerge. No discussion emerged beyond the direct request for insights about breast cancer's causes examined in this project.
Discussion of the results will be organized around the quantitative pie chart results and the open-ended qualitative responses and discussion.
SUMMARY OF PIE CHART RESPONSES
In three of the four focus groups, one participant noted something on her pie chart about the four variables represented failing to account for a total explanation of breast cancer incidence in African American women. In general, the women attributed the largest role for breast cancer incidence to genetics.
Genes. The mean attribution of breast cancer risk to genes was 66.84% (SD = 28.65) with a range of scores from 10% to 99.75%. It has been estimated that the percentage of breast cancer cases under the age of 40 due to genetic risk ranges from 5.3% to 33% (Carter & Hailey, 1999; Gould, 1997). In this sample, only 14.3% estimated the risk in this range. The majority (85.7%) of African American women participating in these focus groups estimated the role of genetics in breast cancer risk as ranging from 40% to 99.75%. Due to sensitivity of the mean to extreme scores on either end, for example a participant's very high or very low score would cast the mean in an unrepresentative light, we also examined the median score for the sample and found it to be 72.5%. Because the mean and median scores were relatively close, our confidence in the conclusion that this sample of African American women perceived genes as a highly significant contributor to breast cancer incidence among women 40 years of age and younger was increased.
Environment. The attribution of risk for breast cancer associated with environment for women 40 years of age and under, on the other hand, was much smaller, with the mean = 9.88% (SD = 9.47). Here, too, the median percentage score for risk was similar to the mean, 7.50%, while scores ranged from 0% to 30%. Thus, the impact of the physical environment on breast cancer incidence was generally viewed as a very small part of the puzzle, with half of the sample attributing less than 5% of risk as being due to the environment.
Social factors. The mean attribution of risk for breast cancer attributed to social factors for women 40 years of age and under was also very small: 3.5% (SD = 6.26). The median percentage score was even smaller: .50%, or less than 1%; scores ranged from 0% to 20%. Half of the sample did not perceive social factors as playing any role in breast cancer incidence. Just over one-third (35.7%) of the participants rated the breast cancer risk associated with social factors as between one to five percent. The remaining women rated the breast cancer risk of social factors as between 15.5% and 20%.
Personal behavior. The mean attribution of risk for breast cancer in women 40 years of age and younger attributed to personal behaviors was 14.64% (SD = 15.28). The median percentage score of risk for personal behavior was 14.5% with ratings ranging from 0 to 55%. Nearly one-fourth of the participants (21.4%) did not believe that personal behaviors played any role in the development of breast cancer under the age of 40. Just over one-fourth of the participants (28.5%) perceived the role of personal behaviors to be between 1% and 10%. The remaining portion of the sample perceived the role of personal behaviors between 19% and 55%.
SUMMARY OF FOCUS GROUP DISCUSSION
Further validating the focus groups' emphasis on the role of genetics in determining women's risk for breast cancer, the participants' oral discussion about breast cancer focused primarily on the impact of genetics. Some discussion addressed the impact of personal behavior, but reference to the environment or social variables as contributors was only tangential, assigning their role to a subcategory of personal behavior. Several themes were reflected in the discussion, supporting the confusion surrounding health messages associated with breast cancer, the lack of perceived self-efficacy to guide personal behavior to prevent and detect breast cancer, and the belief that other variables explain breast cancer incidence among African American women.
Confusing health communication. The role of confusing health communication advice around age and mammography clearly emerged in the discussion. The very health promotion advice aimed at getting women to attain mammograms, which is bounded by age parameters partly due to the density of breast tissue at earlier ages and sensitivity of mammography to such density, contributed to one woman's conclusion that the role of genetics had to be highly significant:
Another participant, when asked to share the results depicted in her pie chart, responded with a question reflecting some confusion about existing messages:
Participant 20 seemed to recognize that genes or family history alone did not determine whether or not someone developed breast cancer. Nonetheless, she attributed 99.75% to genes and only .25% to personal behaviors.
One participant in another group emphasized the role of genes in association with heredity and family history in breast cancer, in the following fashion:
Lack of perceived self-efficacy. As reflected by Participant 34, these women conveyed relatively little confidence in their ability to exercise personal influence over the likelihood that they would get breast cancer during their lifetimes. Only two participants, both members of the same focus group, expressed a view which suggested that a person's behavior is the major determinant in the development of breast cancer for women 40 years of age and younger. One of the participants, who attributed 55% of a woman's risk to personal behavior, stated:
Thus, she contended that the role of personal behavior did not stop with what you are currently doing but also necessarily included what you have done and been through in the past, including exposing oneself to particular environments or social experiences. She was the only one of the participants to rate personal behavior that highly and express the sense that individuals have control over their physical and social environments. Three women rated personal behavior as contributing 20%, with one other woman advocating 19%. In sum, these African American women did not believe that personal behavior played a very significant role in the development of breast cancer, especially as compared to genetics. This suggests that incidence was largely perceived to be outside their realm of control.
Belief in additional influences. Three individuals, one from each of three different focus groups, stated that the four variables examined in this research did not account for the total incidence of breast cancer among African American women 40 years of age and younger. One participant marked a slice of her pie chart amounting to approximately 68% of the variance and marked it as being factors yet to be determined, expressing uncertainty about what the other factors might be.
A participant in another group marked a slice of the pie on her chart (which amounted to approximately 9%) of the risk of breast cancer that was simply "unknown and not accounted for by any of the provided factors."
Participant 32 left an equal space on her pie chart for the unknown contributors as well. She stated:
While the above participant assigned an equal role to genetics and personal behaviors on breast cancer risk, she assigned equal influence to factors yet to be named in breast cancer incidence.
African American women's perceptions of factors associated with risk for breast cancer were evaluated in this exploratory study, revealing three overarching themes. First, health information presented about the role of genes on breast cancer incidence may be confusing, contributing to the fact that these women generally overestimated the role of genes and underestimated the role of personal behavior in the development of breast cancer before the age of 40. Second, these women appeared to lack confidence in their ability to reduce their risk, which may reflect the fact that the women may feel that they have little or no control over what their genes do. The women may believe that if genes determine their risk for breast cancer, then they have no control over whether they are at risk for the disease. These two themes emphasize once more the strong connection between the presentation of health information in health messages and perceptions of self-efficacy. While the message about a genetic component to breast cancer has been widely disseminated, the effects of personal behavior on what effect genes have on our health has not been clearly communicated. Just as previous research suggests, individuals may lack awareness of how genes and the environment interact, these results support the conclusion that the lay public may also lack understanding about the role that personal behavior plays in the effects genes have on individual health. Third, the participants communicated the idea that unknown factors may exist that contribute to breast cancer incidence. Women in three of the four focus group discussions raised the possibility of unknown factors, but none explicitly named or indicated any ideas of what these factors might be or what form they might take. Their responses may stem from distrust of the health industry to share information (Thompson, 2000), fueled by the historic inadequacies and injustices toward minorities exemplified most overtly by Tuskegee. Another possible explanation for the belief that other factors exist to explain breast cancer incidence may be belief in God. The majority of the women reported that they were somewhat or very religious. Perhaps these women believed that divine power plays a role that is mutually exclusive to those factors addressed in the pie charts. In other words, religious-centered African American women may factor their faith into every aspect of their lives, including susceptibility and incidence of breast cancer.
These findings offer some insights regarding African American women's failure to use preventive health care at similar rates to their European American counterparts. Foremost, they suggest that the women may feel powerless to influence whether or not they will get breast cancer, as genetics predetermines risk. Previous efforts to understand attitudes toward early detection have sometimes assigned a significant role to the specific concept of cancer fatalism and fatalism generally (Powe, 1995; 1996). This fatalism may be born in part from a lack of confidence in one's ability to influence the genes one is born with. Thus, both perceptions of lacking self-efficacy in this situation and genetic determinism should be considered as explanations for African American women's actions and attitudes, and targets of health communication messages.
One possible explanation for the overestimation of gene's influence on breast cancer incidence may be related to issues of literacy and numeracy. As stated previously, human genetics information is complex, abstract, and technical and it seems that much of the available health information is not easily accessible to the lay public. Nonetheless, efforts must be made to focus on identifying key ideas that can be communicated in simple ways, perhaps using a metaphor identified by the audience group. For example, a key idea which might be communicated comes from the following information excerpted from Cancer and Genetics: Answering Your Patients' Questions. "It's important to bear in mind that relatively few cancers in the general population--maybe 5% to 10%--are inherited" (Gould, 1997, p. 14). Efficacious application of this message, however, depends on individuals' ability to understand and use numerical expressions such as probabilities, a further parameter to be considered in the design of health messages that seek to increase African American women's perceptions of self-efficacy and decrease cancer fatalism associated with perceptions of genetic determinism.
In sum, this exploratory study suggests that African American women may perceive genetics as playing a much stronger role in breast cancer incidence than it actually does. Due to the small sample size of the present study, future research should explore both whether this perception is generalizable and if so, whether it leads African American women to believe that their personal behaviors will not affect their breast cancer incidence. This perception could be perceived as fatalism based on the current conceptual and operational definitions. However, we suggest that rather than viewing this situation as one solely based on a feeling of helplessness, that there may be two dimensions which create a person's perspective with regard to illness: self-efficacy and genetic determinism. The perception of low self-efficacy alone does not necessarily lead one to feel hopeless. Thus, further examination and development of a multidimensional philosophical model is needed to help develop a more complete understanding of what is an extremely complex phenomena in the African American community. If religiousness or spirituality is influential in the health realm beyond determining an individual's genes or responses to their environment, health communicators must systematically address this in their messages. If distrust of the medical establishment limits perceptions of confidence to impact breast cancer's incidence, building trust must precede efforts to increase attendance at cancer screenings. These insights enhance health communicators' efforts to tailor efficacious breast cancer control messages for African American women, assisting the effort to reduce the gaps in survival rates for African American and European American women. Beyond that immediate goal, this approach may expand our understanding of human responses to illness in more complex and holistic ways by pointing to belief in genetic determinism as a variable limiting individuals' perceptions of self-efficacy and efforts to adopt prevention and detection behaviors.
(1) A complete copy of the original moderator guide may be obtained from the primary author.
(2) In an earlier pilot study of the questions used in the moderator guide, participants indicated what percentage of influence each variable had on the likelihood of getting breast cancer, leading many individuals to fail to respond. Discussion with participants in the pilot study led to the decision to use pie charts to reflect participants' opinions.
Author's Note: This research is a part of a larger study on the lay public's understanding of human genetics research. This research was supported by Grant No. R06/CCR417219 from the Centers for Disease Control and Prevention in Atlanta, GA.
Altpeter, M., Earp, J. A. L., & Schopler, J. H. (1998). Promoting breast cancer screening in rural, African American communities: the "science and art" of community health promotion. Health & Social Work. 23, 104-115.
Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W. H. Freeman and Company.
Breen, N., & Figueroa, J. B. (1996). Stage of breast and cervical cancer. American Journal of Preventive Medicine. 12(5), 319-326.
Carter, C.L., & Hailey, B.J. (1999). Psychological issues in genetic testing for breast cancer. Women & Health, 28, 73-91.
Champion, V. L., Menon, U., McQuillen, D. H., & Scott, C. (1998). Validity of self-reported mammography in low-income African-American women. American Journal of Preventive Medicine, 14(2), 111-117.
Cole-Turner, R. (1999). Faith meets the Human Genome project: Religious factors in the public response to genetics. Public Understanding of Science, 8, 207-214.
Connor, C. S., Touijer, A. K., Krishnan, L., & Mayo, M. S. (2000). Local recurrence following breast conservation therapy in African-American women with invasive breast cancer. American Journal of Surgery, 179, 22-26.
Conrad, M. E., Brown, P., & Conrad, M. G. (1996). Fatalism and breast cancer in Black women. ,Annals of Internal Medicine, 125(11), 941-942.
Forte, D. A. (1995). Community-based breast cancer intervention program for older African American women in beauty salons. Public Health Reports, 110, 179-183.
Garte, S. (1998). The role of ethnicity in cancer susceptibility gene polymorphisms: The example of CYP1A1. Carcinogenesis, 19(8), 1329-1332.
Gould, R. L. (1997). Cancer and genetics: Answering your patients' questions. Huntington, NY: PRR, Inc. and American Cancer Society.
Greenberg, M., & Shneider, D. (1995). The cancer burden of southern-born African Americans: Analysis of a social-geographic legacy. Milbank Quarterly, 73(4), 599-620.
Hallowell, N., Statham, H., Murton, E, Green, J., & Richards, M. (1997). "Talking about chance": The presentation of risk information during genetic counseling for breast and ovarian cancer. Journal of Genetic Counseling, 6, 269-286.
Hoskins, K. F., Stopfer, J. E., Calzone, K. A., Merajver, S. D., Rebbeck, T. R., Garber, J. E., & Weber, B. L. (1995). Assessment and counseling for women with a family history of breast cancer: A guide for clinicians. Journal of the American Medical Association, 273, 577-585.
Jessup, J. M., Menck, H. R., Winchester, D. P., Hundahl, S. A., & Murphy, G. P. (1996). The national cancer data base report on patterns of hospital reporting. Cancer, 78, 1829-1837
Lipkus, I. M., Iden, D., Terrenoire, J., & Feaganes, J. R. (1999). Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. Cancer Epidemiology. Biomarkers & Prevention, 8, 533-539.
Mandelblatt, J. S., Yabroff, K. R., & Kerner, J. F. (1999). Equitable access to cancer services: A review of barriers to quality care. Cancer, 86, 2379-2390.
Panguluri, R. C. K., Brody, L. C., Modali, R., Utley, K., Adams-Campbell, L., Day, A. A., Whitfield-Broome, C., & Dunston, G. M. (1999). BRCA1 mutations in African Americans. Human Genetics, 105, 28-31.
Pentz, M. A. (1995). Prevention research in multiethnic communities: Developing community support and collaboration, and adapting research methods. In G. J. Botvin, S. Schinke, & M. A. Orlandi (Eds.), Drug abuse prevention with multiethnic youth. Thousand Oaks, CA: Sage.
Petrucelli, N., Walker, M., & Schorry, E. (1998). Continuation of pregnancy following the diagnosis of a fetal sex chromosome abnormality: A study of parents' counseling needs and experiences. Journal of Genetic Counseling, 7, 401-415.
Powe, B. D. (1995). Fatalism among elderly African American: Effects of colorectal cancer screening. Cancer Nursing, 18(5), 385-392.
Powe, B. D. (1996). Cancer fatalism among African-Americans: A review of the literature. Nursing Outlook, 44, 18-21.
Ries, L. G., Kosary, C. L., Hankey, B. F., Miller, B. A., Harras, A., Edwards, B. K. (1997). SEER cancer statistics review, 1973-1994. NIH pub. no. 97-2789. Bethesda, MD: National Cancer Institute.
Sadler, G. R., Thomas, A. G., Dhanjal, S. K., Gebrekristos, B., & Wright, E A. (1998). Breast cancer screening adherence in African-American women: Black cosmetologists promoting health. Cancer, 83, 1836-1839.
Schwartz, L. M., Woloshin, S., Black, W. C., & Welch, H. G. (1997). The role of numeracy in understanding the benefit of screening mammography. Annals of Internal Medicine, 127(11), 966-972.
Shaw, M. W. (1996). Influencing breast cancer knowledge, beliefs, and screening practices among Black women. Journal of Wellness Perspectives, 12(4), 180-187.
Steen, L. A. (1991). Numeracy. In S. R. Graubard (Ed.) Literacy: An overview by fourteen experts. New York, NY: Hill and Wang.
Stewart, D.W., & Shamdasani, P.N. (1990). Focus groups: Theory and practice. Newbury Park, CA: Sage.
Thompson, S. N. (2000). African self-consciousness and health-promoting behaviors among African American college students. Journal of Black Psychology, 26(3), 330-345.
Underwood, S. M. (1998). Reducing the cancer burden among African Americans: A call to arms. Cancer, 83, 1877-1884.
Weiss, S. E., Tartter, P. I., Ahmed, S., Brower, S. T., Brusco, C., Bossolt, K., Amberson, J. B., & Bratton, J. (1995). Ethnic differences in risk and prognostic factors for breast cancer. Cancer. 76, 268-274.
Wojcik, B. E., Spinks, M. K., & Optenberg, S. A. (1998). Breast carcinoma survival analysis for African American and White women in an equal-access health care system. Cancer, 82, 1310-1318.
Woolf, S. H., & Lawrence, R. S. (1997). Preserving scientific debate and patient choice: Lessons from the consensus panel on mammography screening. Journal of the American Medical Association, 278, 2105-2108.
Yood, M. U., Johnson, C. C., Blount, A., Abrams, J., Wolman, E., McCarthy, B. D., Raju, U., Nathanson, D. S., Worsham, M., & Wolman, S. R. (1999). Race and differences in breast cancer survival in a managed care population. Journal of the National Cancer Institure, 91, 1487-1491.
Veronica J. Duncan, Ph.D., is a professor at the University of Georgia. Roxanne L. Parrott, Ph.D., is a professor and Kami J. Silk, M.A. is a student at Penn State University. Requests for information concerning this manuscript may be obtained by contacting Roxanne L. Parrott, Ph.D., at the Department of Speech Communication; 234 Sparks Hall; Pennsylvania State University; State College, PA 16802; email: email@example.com.
P38: I did 95% genes and 5% personal behaviors. I'm not really sure about breast cancer. All I know is that you don't have to start getting mammograms until you are 40, so evidently you're not supposed to have ... I guess it's not supposed to be, it's not normal (emphasis added) for you to have breast cancer before the age of 40, so that's why I say genes. Maybe that can affect it.
P12: Isn't that hereditary? To which another participant replied: P20: Yeah it is, but you can have breast cancer and nobody else in your family has it. I don't know about nobody "catching" breast cancer. "Oh, I caught breast cancer."
P34: On breast cancer I put about 83% on genes cause it can be like a handed down factor from generation to generation. On environment I put maybe 5% and social factor I put 2%. I don't think just because you socialize with somebody that you can catch it. And then personal behavior I really put 1%.
P36: I did personal behavior the largest one. Genes 20% because like I said, I think it is more of what you do during the time you're growing up. What you've been through, what you go through, what you do that can cause the behavior. Your own behavior has to do with the environment at 15%, social factors at 15%.
If you have a history of breast cancer in your family then, maybe there's a chance that you might get breast cancer. I put 20% on personal behaviors. Again, that goes back to you take care of yourself and maybe you can do stuff like eating properly, taking vitamins, doing something you can do yourself. And environment I also put 20% because I guess the type of environment that you are living in ... a place near a dump. I don't know if that has anything to do with it but whether you live in a place near a dump or sewage or something, maybe that can have an effect on you having cancer. And social factors I also put 20%.
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