Genetic Testing of African Americans for Susceptibility to Inherited Cancers

Objective: To determine whether prior success in recruiting African Americans to an in-house cancer genetics registry could be duplicated when recruiting to a national registry requiring a significantly increased level of commitment. Additionally, to determine which recruitment sources and practices yielded the highest number of African American participants. Methods: A retrospective analysis of recruitment sources, practices, and results for recruitment to the Cancer Genetics Network (CGN; a national research registry), from 2000 to 2005 was conducted. These results were compared to previous experience in recruiting African Americans to the Family Cancer Registry (FCR; an in-house registry) during the period 1992–2005. Results: In the 1st year of recruitment to the CGN, African Americans accounted for 24% of those consenting to participate in the CGN registry from our center. This compares to an average annual rate of 27% for the FCR during the years 1998–2005, and a rate of less than 1% from 1992 to 1998. By 2005, African Americans accounted for 27% of CGN participants recruited through the University of Texas Southwestern Medical Center, one of eighteen participating institutions in the CGN. Hospital-based resources such as cancer treatment clinics and tumor registries yielded the highest percentage of African American participants (66.5%), and self-referral yielded the lowest (0%). Seventy-seven percent of African Americans were actively sought out and recruited from treatment clinics, whereas the vast majority of Caucasian participants were recruited passively during the course of genetic counseling sessions that were scheduled for reasons unrelated to participation in cancer research. There were no known instances of African Americans contacting CGN staff after reading printed recruitment materials or internet advertisements. Conclusions: The increased level of commitment required of CGN participants did not deter African Americans from participating in cancer genetics research. Recruitment strategies responsible for dramatically increasing recruitment rates to the FCR from 1998 to 2000 were equally effective when used for recruitment to the CGN. The most effective recruitment sources were high-yield venues such as cancer treatment clinics and tumor registries, and active recruitment methods yielded the highest number of African American participants. Advertising through internet announcements and printed recruitment materials did not appear to be effective.

Section: Discussionsupporting

confidence: 59%

Section: Discussionmentioning

confidence: 99%

Successful Strategies for Increasing African American Participation in Cancer Genetic Studies: Hopeful Signs for Equalizing the Benefits of Genetic Medicine

Patterson¹,

Davis²,

Shelby³

et al. 2008

“…In a study investigating racial/ethnic and gender differences in family cancer history knowledge among patients referred to a high-risk colon cancer clinic, blacks were found to have less knowledge of their paternal family history of cancer than whites [32]. Whether these variations in family cancer history knowledge by race/ethnicity were potentially related to cultural differences in willingness to discuss cancer-related issues with family members [33], particularly with relatives more distant than first-degree, is unclear. However, the number of non-white respondents in this study was quite small, resulting in unstable reported prevalence by race/ethnicity.…”

Section: Discussionmentioning

confidence: 99%

Prevalence of Family History of Breast, Colorectal, Prostate, and Lung Cancer in a Population-Based Study

Mai¹,

Wideroff²,

Greene³

et al. 2010

Background: A positive family history is a known risk factor for several cancers; thus, obtaining a thorough family cancer history is essential in cancer risk evaluation and prevention management. Methods: The Family Health Study, a telephone survey in Connecticut, was conducted in 2001. A total of 1,019 participants with demographic information and family cancer history were included in this study. Prevalence of a positive family history of breast, colorectal, prostate, and lung cancer for first- and second-degree relatives was estimated. Logistic regression was used to compare prevalence by demographic factors. Results: A positive family history among first-degree relatives was reported by 10.9% (95% Confidence Interval, CI = 8.8–13.3) of respondents for breast cancer, 5.1% (95% CI = 3.9–6.7) for colorectal cancer, 7.0% (95% CI = 5.2–9.4) for prostate cancer, and 6.4% (95% CI = 4.9–8.3) for lung cancer. The reported prevalence of family history of specific cancers varied by sex, age and race/ethnicity of the respondents. Conclusion: Family history prevalence for 4 of the most common adult solid tumors is substantial and the reported prevalence varied by respondent characteristics. Additional studies are needed to evaluate tools to promote accurate reporting of family history of cancer.

“…Despite increasing recognition of the importance of genetic risk information and availability of genetic counseling and testing for BRCA1/2 mutations [2], numerous studies show that high risk African-American women may substantially underuse genetic services [2,3,4,5,6,7,8]. Indeed, White women have been reported to be 5 times more likely to undergo genetic counseling for BRCA1/2 testing compared to African-American women [6].…”

Section: Introductionmentioning

confidence: 99%

Ethnic, Racial and Cultural Identity and Perceived Benefits and Barriers Related to Genetic Testing for Breast Cancer among At-Risk Women of African Descent in New York City

Sussner

Edwards

Thompson

et al. 2011

Background: Due to disparities in the use of genetic services, there has been growing interest in examining beliefs and attitudes related to genetic testing for breast and/or ovarian cancer risk among women of African descent. However, to date, few studies have addressed critical cultural variations among this minority group and their influence on such beliefs and attitudes. Methods: We assessed ethnic, racial and cultural identity and examined their relationships with perceived benefits and barriers related to genetic testing for cancer risk in a sample of 160 women of African descent (49% self-identified African American, 39% Black-West Indian/Caribbean, 12% Black-Other) who met genetic risk criteria and were participating in a larger longitudinal study including the opportunity for free genetic counseling and testing in New York City. All participants completed the following previously validated measures: (a) the multi-group ethnic identity measure (including ethnic search and affirmation subscales) and other-group orientation for ethnic identity, (b) centrality to assess racial identity, and (c) Africentrism to measure cultural identity. Perceived benefits and barriers related to genetic testing included: (1) pros/advantages (including family-related pros), (2) cons/disadvantages (including family-related cons, stigma and confidentiality concerns), and (3) concerns about abuses of genetic testing. Results: In multivariate analyses, several ethnic identity elements showed significant, largely positive relationships to perceived benefits about genetic testing for breast and/or ovarian cancer risk, the exception being ethnic search, which was positively associated with cons/disadvantages, in general, and family-related cons/disadvantages. Racial identity (centrality) showed a significant association with confidentiality concerns. Cultural identity (Africentrism) was not related to perceived benefits and/or barriers. Conclusions: Ethnic and racial identity may influence perceived benefits and barriers related to genetic testing for breast and/or ovarian cancer risk among at-risk women of African descent. Genetic counseling services may want to take into account these factors in the creation of culturally-appropriate services which best meet the needs of this heterogenous population.