Effect of Genetic Counseling and Testing for <i>BRCA1</i> and <i>BRCA2</i> Mutations in African American Women: A Randomized Trial

Abstract

Background: Limited empirical data are available on the effects of genetic counseling and testing among African American women. Objective: To evaluate the effects of genetic counseling and testing in African American women based on different levels of exposure: (a) women who were randomized to culturally tailored (CTGC) and standard genetic counseling (SGC) to women who declined randomization (non-randomized group), (b) participants and non-participants in genetic counseling, and (c) BRCA1 and BRCA2 (BRCA1/2) test result acceptors and decliners. Design: Randomized trial of genetic counseling conducted from February 2003 to November 2006. Measures: We evaluated changes in perceived risk of developing breast cancer and cancer worry. Results: Women randomized to CTGC and SGC did not differ in terms of changes in risk perception and cancer worry compared to decliners. However, counseling participants had a significantly greater likelihood of reporting reductions in perceived risk compared to non-participants (p = 0.03). Test result acceptors also had a significantly greater likelihood of reporting decreases in cancer worry (p = 0.03). However, having a cancer history (p = 0.03) and a BRCA1/2 prior probability (p = 0.04) were associated with increases in cancer worry. Conclusions: Although CTGC did not lead to significant improvements in perceived risk or psychological functioning, African American women may benefit from genetic counseling and testing. Continued efforts should be made to increase access to genetic counseling and testing among African American women at increased risk for hereditary disease. But, follow-up support may be needed for women who have a personal history of cancer and those with a greater prior probability of having a BRCA1/2 mutation.

The Role of Knowledge on Genetic Counseling and Testing in Black Cancer Survivors at Increased Risk of Carrying a BRCA1/2 Mutation

“…Our results differ from those that found psychosocial factors of medical mistrust and perceived risk of cancer to be correlated with GCT engagement (Armstrong et al, 2005; Halbert, Kessler, Troxel A.B., Stopfer, & Domchek, 2010; Lipkus, Iden, Terrenoire, & Feaganes, 1999; Sheppard et al, 2013), which may be due to the fact that our sample was comprised of only Black at-risk survivors. It is noteworthy that most survivors in this study sample had low reported rates of risk perception for developing a new cancer, which was also found in Brewster and colleagues’ study (Brewster et al, 2007) with Black at-risk survivors.…”

Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review

“…Across all studies, there was an average of 98 African American women participants (range, 13 to 266 women; Matthews et al 2000; Lipkus et al 1999). Among the prospective studies, three recorded measurements at one time point and assessed subsequent risk assessment participation (Halbert et al 2005b; Hughes et al 2003; Thompson et al 2002), four reported the findings from randomized control trials (Halbert et al 2006, 2010; Lerman et al 1999; Charles et al 2006) and six reported only baseline data as part of a larger intervention study (Halbert et al 2005a; Lipkus et al 1999; Kessler et al 2005; Hughes et al 1997; Edwards et al 2008; Durfy et al 1999). Two studies used a qualitative approach (Matthews et al 2000; Ford et al 2007) involving focus groups with African American women.…”

“…AfAm women were the least likely to have heard about genetic testing.Edwards et al (2008)140 (56 %; 74)Personal and/or family history of breast/ovarian cancerTelephone interviews were conducted to explore the relationship between temporal orientation and the pros and cons of genetic testing.Temporal orientation, and pros and cons of genetic testing.Results indicated an association between future orientation and perceived benefits of undergoing testing for both groups.Ford et al (2007)20 (65 %; 13)Above average riskFocus groups were conducted to determine factors influencing perceptions of breast cancer genetic counseling.Factors (background, cognitive/psychosocial, social, and systematic) influencing perceptions of breast cancer genetic counseling.AfAm women who received counseling believed they had a “small chance” of developing breast cancer, and believed that changes in lifestyle activities could reduce likelihood of developing the disease.Halbert, Brewster et al (2005)164 (100 %)5–10 % probability of having a BRCA1 / 2 mutationEvaluated the process of recruiting AfAm women into genetic counseling. Women completed baseline interviews followed by genetic counseling prior to genetic testing.Perceived risk of BRCA1 / 2 mutation, genetic counseling uptake.Referral from oncology clinics was the only factor significantly associated with participation in genetic counseling; no association between perceived risk and genetic counseling uptake.Halbert, Kessler et al (2005)141 (100 %)5–10 % probability of having a BRCA1 / 2 mutationExamined cancer-specific distress in AfAm women at an increased risk of hereditary breast and ovarian cancerDistress, history of cancer and avoidance.AfAm women aged 50 and younger, those who are unemployed and women with a personal history of breast or ovarian cancer may be the most vulnerable to experiencing elevated levels of distress during genetic counseling and testing.Halbert, Kessler, Stopfer et al (2006)157 (100 %)5–10 % probability of having a BRCA1 / 2 mutationInvestigated acceptance rates of genetic testing results among AfAm women at increased risk for breast cancer.Perceived risk of BRCA1 / 2 mutation, perceived certainty of risk, worry, genetic testing result acceptance.Women with higher pre-testing beliefs about the probability of being a mutation carrier and those who had less certain beliefs about the certainty of developing cancer were more likely to accept genetic test results.Halbert et al (2010)198 (100 %)Minimum 5 % probability of having a BRCA1 / 2 mutationRCT of genetic counseling and testing (2003–2006) to evaluate effects of genetic counseling and testing in AfAm based on different levels of exposure: (a) women who were randomized to culturally tailored (CTGC) and standard genetic counseling (SGC) to women who declined randomization (non-randomized group); (b) participants and non-participants in genetic counseling; and (c) BRCA1/2 test result acceptors and decliners.Perceived risk of developi...…”

“…Overall, 10 studies included only African Americans in the sample (Matthews et al 2000; Halbert et al 2005a, b, 2006, 2010; Hughes et al 2003; Thompson et al 2002; Lipkus et al 1999; Kessler et al 2005; Charles et al 2006). Of these, nine included only African American women; one included both men and women in the study sample (Matthews et al 2000).…”

“…Fifteen studies included African American women who were at risk for developing breast and/or ovarian cancer; the remaining three included a combined sample of at-risk and not at-risk participants. Most studies ( N  = 14) evaluated predictors, or the process, of participation in genetic susceptibility counseling or testing; far fewer studies ( N  = 4) examined the outcome of testing, counseling, or program participation (Halbert et al 2010; Lerman et al 1999; Charles et al 2006; Ford et al 2007). Uptake of genetic testing and/or counseling was reported by eight studies (Charles et al 2006; Halbert et al 2005b, 2006, 2010; Hughes et al 2003; Thompson et al 2002; Armstrong et al 2005; Ford et al 2007).…”