Knowledge About Genetic Risk for Breast Cancer and Perceptions of Genetic Testing in a Sociodemographically Diverse Sample

Informed consent for genetic testing for breast–ovarian cancer susceptibility requires that women understand basic concepts about the inheritance of cancer susceptibility and the benefits and risks associated with genetic testing. Women awaiting routine medical services (N = 220) were surveyed about their knowledge of breast cancer and cancer genetics and their perceptions of genetic testing and personal risk. There were no racial differences in median income or mean level of education. Compared to Caucasian women, African American women knew significantly less about breast cancer and about genetic risk for breast cancer. African American women had different psychological, social, and economic concerns as evidenced by how they weighted the benefits and risks of genetic testing. This study is the first to assess several dimensions of informed consent for genetic testing among a sociodemographically diverse group. The findings should enable health professionals to target the African American and lower-income populations with the appropriate education and counseling.     

Why do women attend familial breast cancer clinics?

The increasing demand for genetic assessment for familial breast cancer has necessitated the development of cancer genetics services. However, little is known about the factors motivating the client population likely to approach these services. A cross sectional questionnaire survey of 1000 women with a family history of breast cancer was conducted to identify self-reported reasons for attending a familial breast cancer clinic and possible differences in the characteristics of women who were attending for diverse reasons. Before attendance at clinic, 833 women completed a baseline questionnaire (83% response rate). Women who gave personal risk (n=188), awareness of a family history (n=120), risk to family members (n=84), reassurance (n=69), genetic testing (n=65), breast screening (n=46), or prevention (n=39) as their main reason for attending were compared on demographic and medical variables, and on psychological variables including general anxiety, cancer worry, perceived risk, and attitudes towards prophylactic surgery and genetic testing. Important differences in the psychological characteristics of these groups were found, which were unrelated to reported family history. In particular, women who primarily wanted genetic testing felt extremely vulnerable to developing breast cancer, were more likely to be considering prophylactic surgery, and perceived fewer limitations of testing. Those who primarily wanted reassurance were highly anxious about the disease. We recommend that cancer genetics services take into consideration the informational and psychological needs and concerns of their client group.     

Medical Mistrust Influences Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Clinical evidence supports the value of BRCA1/2 genetic counseling and testing for managing hereditary breast and ovarian cancer risk; however, BRCA1/2 genetic counseling and testing are underutilized among black women, and reasons for low use remain elusive. We examined the potential influence of sociocultural factors (medical mistrust, concerns about genetic discrimination) on genetic counseling and testing engagement in a sample of 100 black women at increased risk for carrying a BRCA1/2 mutation. Eligible participants fell into 1 of 3 groups: (1) healthy women with at least 1 first-degree relative affected by breast and/or ovarian cancer, (2) women diagnosed with breast cancer at age less than or equal to 50 years, and (3) women diagnosed with breast and/or ovarian cancer at age greater than or equal to 50 years with either 1 first-degree relative or 2 second-degree relatives with breast and/or ovarian cancer. Participants were recruited from clinical and community settings and completed a semistructured interview. Study variable relationships were examined using bivariate tests and multivariate regression analysis. As expected, genetic counseling and testing engagement among this sample was low (28%). After accounting for sociodemographic factors and self-efficacy (β = 0.37, p < .001), women with higher medical mistrust had lower genetic counseling and testing engagement (β = -0.26, p < .01). Community-level and individual interventions are needed to improve utilization of genetic counseling and testing among underserved women. Along with trust building between patients and providers, strategies should enhance women’s personal confidence. The impact of medical mistrust on the realization of the benefits of personalized medicine in minority populations should be further examined in future studies.     

Association between temporal orientation and attitudes about BRCA1/2 testing among women of African descent with family histories of breast cancer

OBJECTIVE: Previous studies have identified specific attitudes (pros and cons) about BRCA testing held by women of African descent that are associated with decisions to participate in testing. These testing attitudes may be determined, in part, by temporal orientation, or how one perceives the significance of events and the consequences of their actions in terms of past, present, and future. The current study explored the relationship between temporal orientation and pros and cons of BRCA testing among 140 women of African descent with a family history suggestive of a genetic mutation predisposing to breast cancer. METHODS: Participants completed measures of temporal orientation and genetic testing attitudes. RESULTS: Multivariate analyses indicated that future orientation was positively associated with perceived pros of testing. Additional analyses revealed significant associations between temporal orientation and specific item subsets related to the negative and positive impact of testing on family and personal control over one's health. CONCLUSION: These results support an association between temporal orientation and attitudes about BRCA testing among women of African descent with family histories of breast cancer. PRACTICE IMPLICATIONS: Findings support exploration of temporal orientation in future research on BRCA testing decisions among women of African descent and this construct's importance in developing decision aids and tailoring genetic counseling.     

Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer.

PURPOSE: To evaluate attitudes about the benefits, limitations, and risks of genetic testing for BRCA1 and BRCA2 (BRCA1/2) mutations and explore testing intentions in African American women at increased risk for hereditary breast cancer. METHODS: Attitudes and intentions were evaluated by telephone in African American women (n = 74) at moderate and high risk for having a BRCA1/2 mutation. RESULTS: Attitudes about the benefits of genetic testing were endorsed at a higher rate relative to limitations and risks; however, only 30% of respondents indicated that they would definitely have testing. In regression analysis, women most likely to be considering testing were those with fatalistic beliefs about cancer and those who believed they had a BRCA1/2 mutation. Women who had two or more affected relatives were also most likely to be considering testing. Women who had a personal history of cancer and those who believed they were at high risk for developing breast cancer were most likely to report greater limitations and risks. Pros scores were higher among women older than age 50 and those who were unemployed. CONCLUSION: Although African American women at moderate and high risk for BRCA1/2 mutations report favorable attitudes about genetic testing, interest in testing may be limited. Women affected with cancer and those who believe they are at a higher risk for developing breast cancer may be most concerned about the negative consequences of testing. Increased attention may need to be given to beliefs about genetic testing and testing motivations during genetic counseling with African American women.     

HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment

BACKGROUND: Underrepresentation of ethnic minority communities limits the generalizability of HIV vaccine trial results. We explored perceived barriers and motivators regarding HIV vaccine trial participation among low-socioeconomic ethnic minority respondents at risk for HIV. METHODS: Six focus group interviews were conducted using a semistructured interview guide. Participants (N = 58, mean age = 36 years, 37% female, and 56% Latino/a and 35% African American) were recruited using venue-based sampling in Los Angeles. Data were analyzed using narrative thematic analysis and Ethnograph qualitative software. RESULTS: Perceived barriers to HIV vaccine trial participation, in rank order, were (1) vaccine-induced HIV infection, (2) physical side effects, (3) uncertainty about vaccine efficacy, (4) uncertainty about other vaccine characteristics, (5) mistrust, (6) low perceived HIV risk, (7) study demands, (8) stigma, and (9) vaccine-induced HIV seropositivity. Motivators were (1) protection against HIV infection, (2) free insurance and/or medical care, (3) altruism, and (4) monetary incentives. CONCLUSIONS: Population-specific HIV vaccine trial recruitment and implementation strategies should address trial risks from a family perspective, cultural gender norms, mistrust, low perceived HIV risk, the importance of African-American and Latino/a community participation in HIV vaccine trials, and misconceptions about gaining protection against HIV infection. Increasing the cultural relevance of trial recruitment and implementation should facilitate the participation of Latinos/as and African Americans in HIV vaccine trials.     

Race-based medical mistrust,medication beliefs and HIV treatment adherence: test of a mediation model in people living with HIV/AIDS

Race-based medical mistrust significantly predicts non-adherence to antiretroviral therapy (ART) in people living with HIV. The current study builds on previous research that shows beliefs about medication necessity (i.e., “My medicines protect me from becoming worse”) and concerns (i.e., “Having to take my medicines worries me”) mediate the association between race-based medical mistrust and medication adherence. Racial and ethnic minority men and women living with HIV and receiving ART (N = 178) in a southern US city completed computerized measures of demographic and health characteristics, telephone interviews of race-based medical mistrust and medication beliefs, and unannounced phone-based pill counts for ART adherence. Multiple mediation modeling showed that medical mistrust is related to medication necessity and concerns beliefs and ART adherence. Furthermore, medication necessity beliefs predicted ART adherence. The indirect effect of medical mistrust on adherence through medication necessity beliefs was also significant. Results confirm that medication necessity beliefs, although not concerns beliefs, mediate the association between medical mistrust and ART adherence. Medication necessity beliefs offer a viable target for interventions to improve ART adherence in the context of mistrust that patients may have for medical providers and health care systems.     

Responses to Information about Psychosocial Consequences of Genetic Testing for Breast Cancer Susceptibility: Influences of Cancer Worry and Risk Perceptions

We assessed the impact of information about psychosocial consequences of genetic testing for breast cancer susceptibility on interest in and beliefs about genetic testing, and whether these effects vary by levels of either cancer worry or perceived cancer risk. Women (N = 180) in an experimental study were randomly assigned to read one of four messages consisting of standard information along with information about either psychosocial advantages, potential disadvantages, both advantages and disadvantages, or no additional information. Women receiving only standard information reported higher interest in obtaining genetic testing than did women who received additional information about advantages, disadvantages, or both advantages and disadvantages. Cancer worry (but not perceived risk) predicted greater interest and more favorable beliefs about the benefits of testing. Beliefs that testing causes emotional distress were positively associated with worry and negatively associated with risk perceptions.     

Social and cultural factors are related to perceived colorectal cancer screening benefits and intentions in African Americans

Models that explain preventive behaviors, such as colorectal cancer (CRC) screening, do not account for social and cultural factors relevant to African Americans. This exploratory study examined the relationship between socio-cultural factors (e.g., traditional acculturative strategy, group-based medical mistrust, physician ethnicity, and group-level perceptions of susceptibility) and perceived benefits, perceived barriers, and CRC screening intentions among African Americans (N = 198; Age: M = 59.7, SD = 9.9; 65% female; 44% household income $50,000+). Hierarchical multiple regression was used to test the following models with perceived benefits, perceived barriers, and screening intentions as the outcomes: (a) traditional acculturative strategy × medical mistrust; (b) physician’s ethnicity × medical mistrust; (c) group susceptibility × medical mistrust; and (d) group susceptibility × traditional acculturative strategy. Results revealed that perceiving high group susceptibility while being both more culturally traditional and less mistrustful was associated with more perception of screening benefits. Greater intention to be screened was associated with perceiving high group susceptibility while having a more traditional cultural orientation and low levels of mistrust in those with African American physicians. These results suggest that it may be beneficial to include these social and cultural factors in behavioral interventions to increase CRC screening among African Americans.     

Proximal and Distal Predictors of AIDS Risk Behaviors among Inner-city African American and European American Women

AIDS risk behavior and attitudes towards safer sex were studied in a sample of 666 African American and 626 European American women. Condom use, AIDS-related knowledge, risk perception, self-efficacy beliefs, attitudes and perceived partner attitudes, and an assertive coping style were analyzed with regard to mean differences and predictive power in both ethnic groups. Compared to European American women, African American women had less knowledge and lower self-efficacy beliefs towards safer sex behavior, but they perceived themselves to be at more risk and reported greater condom use. Further, ethnicity was found to moderate the effects of the psychological predictors on safer sex behavior. This moderator effect was tested using a structural equation modeling design. In both groups, risk perception was the strongest predictor of condom use. Among African American women, social-cognitive barriers (e.g. low self-efficacy beliefs, negative attitude towards condom use) worked as a second predictor and mediator of the effects of risk perception on condom use. In contrast, among European American women, social-cognitive factors had no effect on condom use. In general, prediction of safer sex behavior was stronger among African American women.     

Satisfaction with genetic counseling for BRCA1 and BRCA2 mutations among African American women

OBJECTIVE: The objective of this study was to evaluate satisfaction with genetic counseling for BRCA1 and BRCA2 (BRCA1/2) mutations among African American women. METHODS: Participants were 54 African American women at moderate and high risk for BRCA1/2 mutations who were offered genetic testing as part of a randomized clinical trial designed to compare the effects of culturally tailored genetic counseling (CTGC) and standard genetic counseling (SGC). Satisfaction with genetic counseling was evaluated using a self-administered questionnaire following culturally tailored or standard pre-test education and counseling. RESULTS: Overall, the majority of women (96%) were very satisfied with genetic counseling; however, only 26% reported that their worries were lessened and 22% reported that they were able to cope better. Women who received CTGC were significantly more likely than women who received SGC to report that their worries were lessened (p<0.05). In addition, women with household incomes less than US$ 35,000 were significantly more likely to report that the counselor lessened their worries compared to women with higher incomes (p<0.05). CONCLUSIONS: Most African American women were satisfied with genetic counseling; however, women who received culturally tailored genetic counseling were significantly more likely to strongly agree that their worries were lessened compared to women who received standard genetic counseling. PRACTICE IMPLICATIONS: Discussion of cultural beliefs and values during genetic counseling may be beneficial to African American women, especially those with low incomes.     

Barriers to the use of genetic testing: A study of racial and ethnic disparities

PurposeRacial and ethnic disparities in health are evident among a range of diseases and health care services. New genetic technologies are likely to increase these disparities as access to expensive genetic tests further widens the gap.MethodsOur analysis used data from a national representative sample collected in 2000. The total sample size for our analysis was 1724 men and women (consisting of 946 non-Hispanic whites, 392 Latinos, and 386 blacks) aged 18 to 91 years. Ordered logistic regression and binary logistic regression analysis were applied to investigate differences by race/ethnicity.ResultsResults showed significant differences by racial/ethnic groups in knowledge and concerns about the potential misuse of genetic testing. A significant difference was also found between the types of health insurance coverage by race/ethnicity as well as significantly higher levels of mistrust in a physician and the medical system.ConclusionOur findings raise concern about several barriers among minorities and calls for a development of educational and communication strategies that facilitate in narrowing the gap between racial and ethnic groups.     

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

The scope of conditions for which preimplantation genetic diagnosis (PGD) is licensed has recently been expanded in the United Kingdom to include genetic predisposition to adult-onset cancer. This qualitative interview study explores reproductive decision making, knowledge of and attitudes to reproductive genetic testing (prenatal diagnosis and PGD) with 25 women aged 18-45 years who received a positive BRCA test in the United Kingdom before having children. In this cohort of younger women, BRCA testing was motivated by risk management decisions; for some, BRCA status has affected their later decisions about having children. The perceived severity of hereditary breast/ovarian cancer (HBOC) influences thoughts about passing on the mutation to children and willingness to consider reproductive genetic testing, but most participants do not believe HBOC is a condition for which pregnancy termination is justified. PGD is considered more acceptable and advantageous because it would prevent transmission to future generations, but women have concerns about selecting embryos and the fact that they and affected family members would not have been selected. Women would also be deterred by the need to undergo in vitro fertilisation (IVF) and ovarian stimulation for PGD. Awareness of reproductive testing options was very variable among the cohort. The findings highlight the complexities of reproductive decision making for young women who knowingly carry a BRCA mutation, and the dilemmas inherent to reproductive genetic testing when the condition being tested for also affects a prospective parent. Counselling and psychological support for BRCA-positive women and couples concerning reproductive options are strongly indicated.     

Knowledge, beliefs and barriers associated with prostate cancer prevention and screening behaviors among African-American men

African-American men have the highest prostate cancer rates worldwide, and innovative efforts are needed to increase cancer prevention and screening behaviors among this population. Formative research was conducted to assess attitudes and behaviors linked to prostate cancer prevention activities that could be used to develop a culturally relevant intervention for an African-American church-based population. Four gender-specific focus groups were conducted with 29 men and women at two African-American churches in central North Carolina. Three primary themes emerged from the focus group discussions: culturally and gender-influenced beliefs and barriers about cancer prevention and screening; barriers related to the healthcare system: and religious influences, including the importance of spiritual beliefs and church support. These discussions revealed the importance of the black family, the positive influence of spouses/partners on promoting cancer screening and healthy behaviors, the roles of faith and church leadership, and beliefs about God's will for good health. These findings also revealed that there are still major barriers and challenges to cancer prevention among African Americans, including continued mistrust of the medical community and negative attitudes toward specific screening tests. Findings provide important insights to consider in implementing successful prostate cancer prevention interventions designed for church-based audiences.     

Parents’ attitudes toward genetic testing of children for health conditions: A systematic review

This review assessed parents’ attitudes toward childhood genetic testing for health conditions, with a focus on perceived advantages and disadvantages. We also evaluated the factors that influence parents’ attitudes toward childhood genetic testing. We searched Medline, Medline In‐Process, EMBASE, PsycINFO, Social Work Abstracts and CINAHL. We screened 945 abstracts and identified 21 studies representing the views of 3934 parents. Parents reported largely positive attitudes toward childhood genetic testing across different genetic tests with varying medical utility. Parents perceived a range of advantages and disadvantages of childhood genetic testing. Childhood genetic testing was viewed by most as beneficial. Parents’ education level, genetic status, sex and sociodemographic status were associated with reported attitudes. This yielded some conflicting findings, indicating the need for further research. Genetic counseling remains essential to support this population in making well‐informed decisions. Targeted interventions tailored to specific families with different sociodemographic characteristics may be useful. Further research on the long‐term impact of childhood genetic testing on families is warranted.     

Factors associated with preimplantation genetic diagnosis acceptance among women concerned about hereditary breast and ovarian cancer

PurposeTo assess sociodemographic, clinical, awareness, and attitudinal factors associated with acceptance of preimplantation genetic diagnosis among women concerned about hereditary breast and ovarian cancer.MethodsParticipants (n = 962) were members of a national advocacy organization dedicated to empowering women at high risk for developing breast or ovarian cancer. Participants completed a web-based survey assessing factors associated with preimplantation genetic diagnosis acceptance. Factors significantly associated with acceptance in the bivariate analyses were used to build a logistic regression model.ResultsAmong the 962 respondents, 318 (33.1%) selected the option that they would consider preimplantation genetic diagnosis, 367 (38.2%) would not consider preimplantation genetic diagnosis, and 277 (28.8%) selected “don't know.” Significant predictors of preimplantation genetic diagnosis acceptance were the desire to have more children, having had a prenatal genetic test, preimplantation genetic diagnosis awareness, belief that preimplantation genetic diagnosis is acceptable for individuals at risk for hereditary breast and ovarian cancer, belief that preimplantation genetic diagnosis information should be given to individuals at risk for hereditary breast and ovarian cancer, concerns about preimplantation genetic diagnosis, perceived benefits of preimplantation genetic diagnosis, and how preimplantation genetic diagnosis is considered.ConclusionWomen at increased risk for hereditary cancer may consider preimplantation genetic diagnosis as part of their reproductive decision making. Therefore, it is important to understand existing levels of awareness and attitudes toward this technology to provide optimal counseling and support.     

Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations

We report on results of an interview study assessing women's attitudes toward and hypothetical interest in genetic susceptibility testing for breast cancer. Data are from 246 interviews with women of varying ethnicity (African American, European American, Native American, and Ashkenazi Jewish), family history of breast cancer (negative, positive, and borderline), and educational level. Semistructured interviews included questions on general health beliefs; attitudes, experiences, and concerns about breast cancer; and hypothetical interest in genetic testing. Influence of specific test characteristics was assessed with 14 Likert scales varying negative and positive predictive value, timing of disease, possible medical interventions following a positive result. Results reported include both statistical and qualitative analysis. We found that women had a high level of interest in testing which, in general, did not vary by ethnicity, level of education, or family history. Interest in testing appeared to be shaped by an exaggerated sense of vulnerability to breast cancer, limited knowledge about genetic susceptibility testing, and generally positive views about information provided through medical screening. However, study participants were most interested in a test that didn't exist (high positive predictive value followed by effective, noninvasive, preventive therapy) and least interested in the test that does exist (less than certain positive predictive value, low negative predictive value, and limited, invasive, and objectionable therapeutic options). Our data suggest that without a careful counseling process, women could easily be motivated toward interest in a test which will not lead to the disease prevention they are seeking.     

The interacting effects of psychological empowerment and ethnic identity on indicators of well‐being among youth of color

Decades of legislative actions and power imbalances have limited African American/Black and Hispanic/Latina(o) urban youth's perceptions of empowerment and ability to rely upon social and institutional resources. Youth who have access to supportive resources and are connected to their ethnic–racial group perceive themselves as empowered and score higher on indicators of well‐being. Among a sample of African American/Black and Hispanic/Latina(o) urban youth (N = 383) and using multivariate analysis of variance, the current study examined the relationship between psychological empowerment (PE) and ethnic identity among conceptually relevant outcome variables: community participation, neighborhood sense of community (SOC), school importance, and perceived substance use risk. Results indicated that PE and ethnic identity profile groups differed significantly on measures of community participation, neighborhood SOC, school importance, and perceived risk of using substances. Results provide preliminary support for the empirical and theoretical relationship between PE and ethnic identity on related empowerment measures, as well as indicators of well‐being. Implications and directions for future research are discussed.     

Perception of predictive testing for Huntington's disease by young women: preferring uncertainty to certainty?

Opinions on the implications of predictive testing for Huntington's disease were evaluated in a group of 169 women (aged 21-35 years) with interest in psychosocial issues, but with no special pre-existing knowledge or training in genetics. Predictive testing for Huntington's disease (HD) is considered to be a test case for predictive testing for other late onset diseases, monogenic as well as multifactorial disorders. In the hypothetical situation of having a 50% risk for developing HD, about half of the group expressed interest in a predictive test. As to the question of giving results of predictive tests to third parties, the group would be very reluctant to inform the employer or the insurer, but not their own family. Prenatal testing for late onset diseases was considered acceptable by half of the women; only one quarter of the total group would terminate a pregnancy of a child that might develop a late onset disease. The assessment of attitudes towards predictive testing was carried out within the context of a global evaluation of perceived advantages and disadvantages of genetic counselling. The attitudes towards predictive testing were systematically associated with perceiving 'having more certainty about the future' as an advantage of genetic counselling and with rejecting 'knowing everything in advance' as a disadvantage.