Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women

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Abstract

Participation in genetic testing for cancer risk is low among women of medically underserved ethnic groups and this is due, in part, to genetic testing attitudes, specifically perceived disadvantages of genetic testing and concerns about possible abuses of genetic testing. The goals of the current study were to: (a) explore genetic testing attitudes, and (b) determine the extent to which ethnicity, awareness of genetic testing, and medical mistrust are associated with genetic testing attitudes. African American, Latina, and Caucasian women (N=273) completed an interview assessing sociodemographic information, genetic testing awareness, medical mistrust, and genetic testing attitudes. Latina participants more strongly agreed with disadvantages of testing than the other ethnic groups. Both Latina and African American women more strongly concurred with concerns about testing abuses compared to Caucasian women. In hierarchical linear regression analyses, Spanish language preference and medical mistrust were the only significant predictors of perceived disadvantages and medical mistrust was the only significant predictor of abuse concerns. These findings support the importance of identifying genetic testing attitudes that may be culturally specific in order to promote culturally competent care by genetic risk professionals.

Introduction

There is a growing body of research elucidating the role of genetics in cancer, particularly for breast and colorectal cancer [1], [2], [3], [4]. Tests to determine one’s genetic predisposition for developing these cancers are now available. The assessment of individual genetic risk for breast and colorectal cancer has a number of potential benefits, including the facilitation of more informed decisions regarding breast cancer prevention (e.g. prophylactic mastectomy), the determination of family members’ risk and personal reassurance [5], [6], [7], [8], [9], [10], [11]. Although the use of genetic risk assessment services is increasing, women of medically underserved groups are less likely to report past use of genetic testing services or provide a blood sample for analysis, even when they are appropriate candidates based upon their family history [12], [13]. This trend appears to mirror lower rates of regular breast and colorectal cancer screening (e.g. mammography, colonscopy) among these groups [14].

Underutilization of genetic risk services may be due, in part, to perceived disadvantages of genetic testing among such groups. Unfortunately, much of what is known about barriers or disadvantages of genetic testing is based upon Caucasian women of moderate or high socioeconomic status. Few studies have examined ethnic differences in perceived disadvantages of genetic testing for cancer risk [13], [15], [16] and those have compared only African American and Caucasian women in terms of attitudes about testing for BRCA1/2 mutations that increase breast cancer susceptibility. Studies report that African American women more strongly agree with testing disadvantages compared to Caucasian women, with a greater proportion of African American women reporting concerns that testing would be too difficult to handle emotionally and might have a significant effect on family members [13], [15] as well as concerns about confidentiality of test results [15], [16].

Data showing ethnic differences in genetic testing attitudes represent an important advance in understanding factors that potentially impact testing decisions. However, there are other beliefs and attitudes that may vary across ethnic groups and have yet to be examined. For example, there is evidence that African American women who declined BRCA1/2 counseling were more likely to anticipate that they would feel ashamed, singled out, and that others would view them negatively if they were found to carry the BRCA1/2 mutation compared to women who accepted counseling [17]. Thus, the stigma that may accompany mutation status has been shown to be associated with use of genetic risk services in certain ethnic populations. Low prioritization of genetic testing may also rank highly as a disadvantage of testing as a function of culture-based definitions of health and illness. For example, several authors have noted that within Latino cultures, illness is defined as a state of physical discomfort, and one is categorized as healthy if one is pain-free and is functioning adequately. Medical care may only be sought when functioning is dramatically impaired [18], [19]. Individuals with this view of health and illness may be even less likely to seek professional support for a pre-symptomatic condition such as a genetic predisposition.

Another understudied area related to genetic testing attitudes is that of perceptions of potential abuses of genetic testing. The ethics of genetic testing have long been an intense area of discussion and debate focusing largely on issues such as clinical benefit, informed consent, participants’ decisional autonomy, confidentiality and access to test results, and social discrimination [20], [21], [22]. These issues largely focus on the impact of testing on individuals and their immediate social networks. However, little work has assessed ethical concerns about the misuse of genetic testing in racial and cultural context and as it applies to broad segments of society. The domain of genetic testing and research has long been a sensitive one among many ethnic groups. For example, Brawley and Tejeda [23] note that the term “genetic” has often been used in arguments alleging African Americans’ inherent inferiority to other groups, particularly in terms of intelligence and morality. Furthermore, African Americans have been the targets of selective testing for genetic traits that has resulted in further discrimination against this group, particularly in the arena of employment, as well as the reinforcement of unfavorable racial stereotypes [24], [25]. This may contribute to apprehension among African Americans about genetic technology, even when it may have health benefits. Additionally, the exploration of genetic risk may violate one’s religious principles to the extent to which medical conditions or predispositions are viewed as part of “God’s plan” and whether one believes that genetic technology may disrupt this plan [24].

Further research on genetic testing disadvantages and concerns about genetic testing abuses, as well as the correlates of such attitudes, may guide the development of targeted efforts to assist women in medically underserved ethnic groups in making informed decisions about determining their personal cancer risk. Important predictors of attitudes to consider include previous exposure to information about genetic testing, or awareness. Studies have shown that lower awareness was associated with greater perceived limitations or disadvantages of testing [13] but greater awareness, specifically higher level of genetics knowledge, was related to ethical concerns that genetic tests would lead to eugenics [26]. Another under-examined variable that may predict genetic testing attitudes is medical mistrust. Hughes et al. [13] report that, compared to white women, African American women were more likely to report the untrustworthiness of modern medicine as a barrier to BRCA testing. This is consistent with other work showing that among some ethnic groups, suspicion influences medical decisions, including cancer screening [27], [28], [29].

The purpose of the research reported here is to: (a) explore perceived disadvantages of genetic testing for cancer risk as well as concerns about related abuses, and (b) determine the association among such genetic testing attitudes and ethnicity, awareness of genetic testing, and medical mistrust. This cross-sectional study is based on a community-based survey of African American, Latina, and Caucasian women with varying family histories of cancer. Although much previous work on genetic testing attitudes across ethnic groups has focused on women with a family history of cancer, reports suggest that interest in genetic testing for cancer risk is fairly high in the general population [30], [31]. This observation increases the relevance of an investigation of genetic testing attitudes and concerns in a broader group.

Section snippets

Participants and procedure

Participants were 273 women who were recruited through the East Harlem Partnership for Cancer Awareness (EHPCA), a collective of hospitals and community health centers located in northern Manhattan, New York City that delivers the vast majority of primary and ambulatory care to East Harlem residents. Participants either lived, worked, or sought health care in East Harlem, were at least 18 years of age, spoke English or Spanish, and were able to provide meaningful informed consent (i.e. able to

Sample characteristics

Two hundred seventy-three women were included in the sample. Table 1 presents sample characteristics. The sample was 42% African American (n=115), 40% Latina (n=110), and 18% Caucasian (n=48). The mean age of the total sample was 46.1 years (S.D.=17.1). A total of 55% of the sample reported a household income of US$ 19.999 or less and 52% of the sample reported a high school degree or lower. Only 11% (n=30) reported that they had no health insurance. A total of 55% (n=150) of the sample were

Discussion

Results of the current study revealed ethnic differences in agreement with specific disadvantages of genetic testing for cancer risk, as well as for ethnic differences in agreement with overall concerns about abuses of genetic testing.

Latina participants reported greater perceived disadvantages of genetic testing for cancer risk but when sociodemographic variables were controlled, this finding was no longer significant. However, interesting differences were observed in agreement with specific

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    Preparation of this manuscript was sponsored in part by grants from the National Cancer Institute (CA86107-01, CA81137) and the Department of Defense (DAMD 17-01-1-0334).

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